Wednesday, October 27, 2010

Mis-diagnosis results in 3 children with Mito removed from family

On October 24, 20089, three children in Ontario were removed from their family because the hospital they used accused the mother of faking their illnesses. The children suffer from Mitochondrial Disease. Their mother Carolyn Scholey is raising awareness of the danger this could happen to anyone. Since she began, two of the three children have been returned to her, but the third - little Joshua - is still in the custody of authorities. Carolyn struggles with the legal system to have him reunited with his family, but progress is painfully slow in coming.

Mitochondrial disease (Mito) is a disorder in which the part of the cell that produces energy malfunctions. These energy producing cell parts are called the Mitochondria, and they produce about 90% of the energy your body needs to function and survive. When the mitochondria aren't working properly, cell injury and death result. If this goes on long enough, whole systems begin to fail. Receiving a diagnosis and treatment for mito is vital to a positive outcome. Mitochondrial disorders are progressive diseases. If progression continues far enough, the body can no longer sustain life, and the patient dies. Until serious damage occurs, Mito is often considered an invisible illness.

Usually mitochondrial disorders are diagnosed in childhood. Now that we know more about mito, adult onset of the disease is being recognized much more frequently than previously thought. Still, it is difficult to diagnose and there are precious few doctors who know enough about it to recognize or help patients with the condition.

Mito can easily be misdiagnosed. Other diseases and disorders like gastrointestinal disease, Migraine and Autoimmunity are frequent misdiagnosis'.

Mitochondrial disorders can be inherited. One of the most famous cases of mitochondrial disorders was Mattie Stepanek and his family. Mattie was born with the condition, and his mother was advised to institutionalize him and "let nature take its course". Mattie lost all his siblings to the same disease he and his mother had, yet he grew up to be an inspirational poet and peacemaker dear to millions. Mattie died of his disease at the age of 14.

Mito can be triggered by medications, toxins, or illness.

Mitochondrial disorders create a variety of symptoms depending on which cells, organs and systems are effected first. Some symptoms of Mito include:

* Difficulty controlling movement, weakness
* Neurological problems. Seizures, Migraine, movement disorders, balance trouble.
* Autistic-like features
* Heart, liver, kidney disease
* Swallowing difficulties, and gastric motility problems = stasis, vomiting, severe constipation
* Diabetes
* Increased risk for infection
* Thyroid and/or adrenal dysfunction
* Autonomic dysfunction
* Cognition trouble, confusion, disorientation, memory loss
* Pain

When I read about this family, I was compelled to veer from my normal blog topics in the interest of letting you know about the situation and about Mito. I'm afraid Carolyn's family's story is illustrative of what can happen when physicians choose not to dig deeply enough for an appropriate diagnosis.

I do believe Occam's Razor applies to science - All things being equal, the easiest answer is usually the correct one. However, I think that not enough emphasis is put on the word 'usually' in a medical situation. Medicine is science, but it is more than that, and people's lives are on the line.

So often I hear from patients who have been told their illness is psychogenic, or they are referred to a psychiatrist to "get their problems straightened out". Depression results, and anger. Doctors down the line see the depression and the anger and assume the initial psychogenic assessment was correct instead of a self-affirming prophecy. And so the snowball begins its roll down the hill...

I know just a little about Mito, but other Health Activists are very active in the Mito community. For more information I suggest clicking the links in the text above and below, or contacting the following Health Activists, who can put you in contact with even more HA's!


You can read more about Mito here:

Mitochondrial Disease and Dystonia
Comment by MeganM on November 1, 2010 at 12:52pm
Ellen- This story is absolutely heart-wrenching but I'm so glad you shared it! Also the links were extremely helpful, thank you. Great post as always :)
Comment by Ellen S on November 1, 2010 at 2:36pm
Thanks Megan, I always hate to hear when misdiagnosis occurs, but to have that misdiagnosis result in a family being wrongly separated... well that is just one example of the collateral damage of undiagnosed chronic illness.
Comment by Debby on November 4, 2010 at 11:22pm
Thank you for educating us on this illness. We take so much for granted. Blessings.
Comment by Ellen S on November 5, 2010 at 2:28pm
Thanks Debby! Mito is one illness whose symptoms cross so many barriers. Very few doctors know much about it at all, so there is a very good chance many mito patients are suffering without that vital diagnosis.

I'm happy to say that the mother did report back that she found out child #3 does NOT have Mito - Yay!

Tuesday, October 26, 2010

Raynaud's Triggers - a List

Cont'd from What is Raynaud's Phenomenon?

A trigger is something that makes it more likely a Raynaud's attack will occur. It does not cause the condition, but often encourages the attack.

Each person is different. Not all will have the same triggers. What triggers an attack today, may not tomorrow. Additionally, each attack is different. It may affect only your fingertips today, but your whole hand and arm tomorrow - even with the same trigger.

Here is a list of some potential Raynaud's triggers:

Cool temperatures trigger an attack because the body overreacts to the temperature change - even a mild change - constricting vessels to preserve body temperature of its core. It is 'sacrificing' the extremities for the most crucial organs.

* Air conditioner breezes
* Opening the freezer or refrigerator
* Touching something cool or cold - even a cool glass of something to drink, or cutting veggies
* Walking outdoors
* Sitting next to something cool
* Temperature changes from warm to tepid, cool or cold
* Eating or drinking something cool
* Eating or drinking large amounts at a time.
* Breathing in cool air
* Holding hands under running cool water, swimming in a pool, or leaving a hot tub

Other miscellaneous triggers

* Vibration - sitting in a car or holding the steering wheel. Tools that vibrate like a sander, a saw, a grinder, etc.
* Trauma and repetitive trauma, or carpal tunnel syndrome - may damage the nerves responsible for normal response.
* Stress - all types including physical, mental and emotional. Release of cortisol and other adrenal hormones cause constriction of blood vessels and can trigger an attack. Pain is a frequent trigger.
* Disease - endocrine, autoimmune, illness in general, etc.
* Medications - Some medications will trigger Raynaud's including Migraine medicines, blood pressure medicines, anxiety medications, anti-histamines, hormone and birth control medicines, etc. Always check with the doctor, pharmacist, online and with the label before beginning a new medicine.
* Caffeine - and other stimulants can be found in strange places, including candy, shampoo and soaps, cosmetics and OTC medications.
* Magnesium deficiency - Mag is the mineral responsible for muscle relaxation, including the vascular muscles.
* Chemical exposure
* Smoking
* Fluorescent lights

Do you have some triggers to add?

Thursday: Neat tools for living with Raynaud's and autoimmune disease

Friday, October 22, 2010

What is Raynaud's?

When I was in school, my friends called me "dead hands" because they would turn blue with cyanosis. Even stranger was when they would also turn white. Sometimes they would appear red, white and blue - all at the same time! They were numb. I'd thump a finger on the desk and it felt like it was someone else's hand. Raynaud's was the first visually undeniable inclination we had that I was an autoimmunie.

Raynaud's (or Reynaud's) is a condition that may be primary (not associated with other disease, called Raynaud's Disease) or secondary to another disease (then called Raynaud's Phenomenon). In the case of most autoimmunies, their Raynaud's is a result of their autoimmune condition. It is much more frequently found in women than men.

Raynaud's is a condition of the sympathetic nervous system. This is a part of your nervous system which you cannot control. Sweating is a part of the sympathetic nervous system. When you become hot, your brain signals your body to to cool itself by sweating.

Raynaud's is an overreaction of the sympathetic nervous system. A tiny breath of cool air, handling a vibrating tool or steering wheel, or a little stress is all that it takes for the body to assume it's going to die and take precautions to save the most important organs. The blood vessels of the extremities squeeze very tight, resulting in numbness and color change.

Raynaud's may affect any or all of the extremities including fingers and toes, hands and feet, arms and legs, chin, nose and lips, and ears. It is the most common symptom podiatrists encounter. Raynaud's patients are often called 'Frosties'. These patients frequently have other diseases and disorders that involve the abnormal constriction of blood vessels such as Migraine, variant angina and pulmonary hypertension.

There are four phases to a classic Raynaud's attack:

1. Pallor - loss of color. May appear abnormally white because arteries are constricted, blood flow restricted.
2. Cyanosis - area turns blue to purple as tissues become oxygen starved.
3. Rubor - circulation returns and the area turns red. It may also swell.
4. Normalization

Not all four phases are always seen with each attack, or in each person. If a woman with Raynaud's becomes pregnant she may see a decline or elimination of symptoms due to increased blood flow. Raynaud's of the breast in a nursing mother can be extremely painful however.

Raynaud's is usually found bilaterally. Rarely it is unilateral - found on only one side of the body. In either case, there is often a distinct line of color change on the extremity, from white, to blue to red.

Usually Raynaud's is fairly self-limiting. However, it can be severe and attacks long-lasting, resulting in tissue death and the need for amputation. Eventually in even moderate cases, permanent damage can occur in the underlying tissues including skin, muscles, blood vessels, nails.

Although there are medicines that many patients find helpful to control their Raynaud's, the best thing to do is to avoid triggering an attack in the first place.

Next, Raynaud's triggers - a list
Comment by Erin on October 29, 2010 at 10:08pm
Is that where your hands and feet feel really cold and often you cant actually FEEL they are cold? cause my workers say they are cold but they dont feel cold to me i have never had them change colour well not that i know of anyway. Who diagnoses this type of thing a neuro or a rheumatologist?
Comment by debdrake on October 29, 2010 at 10:56pm
The podiatrist is the one that told me I have it. I kept getting sores on my feet. So finally I went to the foot doctor. He looked at my feet and asked if they are usually that cold. They were cold and white at the time. He said the sores were from the feet touching the shoes when there was not enough blood in the feet. Its very painful to touch anything frozen or even very cold for any length of time. I'm good about not letting them get to the blue state.
Comment by Ellen S on October 29, 2010 at 11:32pm
Erin, I think there are different doctors that can diagnose this. I had testing done by a thoracic surgeon. It is more than cold extremities though. The color changes are a hallmark of the disorder. Doctors will tell you - if you have Raynaud's, you KNOW you have it, lol. Makes your hands and feet etc look crazy strange.
Comment by Ellen S on October 29, 2010 at 11:32pm
Deb, Have you ever been evaluated for blood sugar or insulin issues?
Comment by Erin on December 10, 2010 at 10:06pm
well what else would make your feet and hands cold but you cant feel the temperature changes? My toe nails always get affected they always split and im not sure about colour changes ive never noticed but ive dont think ive ever had a dr apart from the podiatrist look at them.
just trying to figure all this out
Comment by Ellen S on December 12, 2010 at 1:15am
What did your podiatrist say Erin?  There can be other circulatory issues that can cause these kinds of issues.  Many things I've found can cause nail trouble - including circulation!  Have you had your thyroid and vitamin levels looked at??

Thursday, October 21, 2010

Fighting Raynaud's With Unique Drug Combos

When we run out of the 'normal' medication options used to treat a condition like Raynaud's, our doctors often begin experimenting with combinations, and using other medications in effort to control the issue.

I started this conversation as I was interested in the medications others are currently receiving for their Raynaud's. So far there have been no answers to my discussion, so I thought I'd blog about my own experience in hopes someone else will let me in on theirs.

Past treatment

It's been a long time since I actually tried treating my Raynaud's. Years ago Calcium Channel Blockers were my friend for a while, but long-term, nothing really worked. I basically learned to live with it. My usual goal is to avoid triggering it. Of course, those of you with the condition know this is virtually impossible in the real world, but we do our best.

New medications

Last spring I experienced some very severe attacks - worse than ever before. The pain was tremendous and long-lasting, and I was very lucky I did not suffer extreme tissue destruction. The Raynaud's was pretty normal for me everywhere else, but I was also very lucky that the prolonged and severe vasospasms were especially bad in only a very small spot on the end of one toe. As a result, to try to keep me from losing the end of a digit, my PCP decided to try something a little different.

* Norvasc 2.5 mgs
* Persantine 75 mgs

This is a combination of a newer drug, and an old drug. The Norvasc (amlodipine) is a calcium channel blocker. This means its job is to disrupt the normal flow of calcium in and out of cells. It's usual use is to lower blood pressure. The Persantine (dipyradimole) is a platelet inhibitor. This means it inhibits the formation of blood clots. For this reason it is frequently used on patients who have had heart valve surgery. Unfortunately, it is also used to expand coronary arteries for chemical stress tests. This is good for Raynaud's, bad for Migraine.

Fortunately, both medicines are sometimes useful as Migraine preventives too. Since this is nearly a daily issue with me, I'm hopeful that maybe I'll finally get lucky and find something to lower the severity and number of Migraine days I endure. Unfortunately, "headache" is listed as potential side effects for both medications, leaving me a little afraid to try them.

My doctor tells me that unfortunately, most doctors aren't aware of the benefits of some of the older medicines useful in Raynaud's, as patents run out and they fall out of favor when newer drugs are introduced. In this case, the two drugs I'm told work synergistically together... this means that the two together are more powerful than either one by themselves.

How I begin a clinical trial of any new medicine

Because the weather radically and quickly changed, I did not have to try this new combination last spring. We're keeping it in our back pockets as this fall begins to cool off. My hands and feet have been bluer than normal - even purple - so I am a bit concerned. That being said, I have not yet begun the meds because I'm usually wary of new things. I don't always react to them very well. I wait until I have no plans for several days, then begin a new med at half dose, recording when and how I am taking it and my other meds, as well as any changes in my condition or possible side-effects etc. My family is aware I'm trying something new, so that way if I become sick they are well aware what is going on. In this case, because I do not currently have a neurologist and Migraines may worsen to the point of going out of control, I'll let my pcp know as well, so he can be prepared in case of a Migraine emergency.

Questions for other autoimmunies

I'm told there are other drug combinations that might be useful for autoimmunies that suffer Raynaud's.
What are you taking? What are you seeing in your communities? Has this particular combination of drugs been mentioned anywhere that you've seen yet?

What tips do you have to offer other Raynaud's patients re: avoiding triggers?

Monday, October 18, 2010

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

As you sit reading this, your body is under attack. The kind of attack that could kill you. It's all about the predator and the prey. Thankfully, you have a few bodyguards protecting you from harm.

Your immune system is your body's defense against foreign invaders that cause illness and disease. I like to think of it as an army. There are Generals and there are Soldiers. When everything is working correctly our bodies are able to stay healthy. Sometimes there is damage from friendly fire. The two most common (although different) types of friendly fire damage are Allergy and Autoimmunity.

Before you can truly understand autoimmune disease, it's wise to learn about your immune system itself. This is a complicated, multifaceted subject our doctors don't usually have time to teach us.

This post is designed to give you a few general bullet points you may not have already known about your immune system.

* 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.

* Your skin is the first part of your body's defenses. It protects your insides from all the bad things outside. It secretes antibacterial substances. Special cells called Langerhans cells help to regulate the immune response of the skin.

* Your nose, mouth and eyes, as well as mucosal tissues such as that found in those areas and the digestive, respiratory and reproductive systems, all secrete substances that kill bacteria. These areas are also lined with mast cells - special cells that defend our bodies against potentially harmful assaults.

* Inside your body are additional defenses: Thymus, spleen, lymph system, bone marrow, white blood cells, antibodies, complement system, and hormones all play significant roles in our immune system. Inflammation is vital to our immune system. More on those defenses in upcoming posts...

* Bacteria that gain entrance to the body give off unique chemical signals that alert special cells called phagocytes, which reach around and surround it, then consume/digest it with special chemicals.

* Phagocyte means "cells that eat". There are different types of phagocytes including 'professional' and 'non-professional' phagocytes. Professionals always have the job to eat invaders. Non-professionals sometimes eat invaders, but also have another job.

* Every cell in our bodies, including pathogens (invader cells) have special chemical markers on its surface called Antigens. Identifying these antigens is how the body is able to tell the difference between a pathogen and a normal part of the body (self). When a new pathogen is introduced into the body, its antigens alert the immune system that it is foreign.

* Lymph nourishes cells and carries away bacteria and germs. Among other things, the lymphatic system is the "trash system" of the body. Somebody's got to take out the garbage!

* Lymph glands are designed to act as "trash cans" for invaders. Bacteria and viruses collect there before they are removed by the body. Special cells called Lymphocytes also reside there and respond to pathogens (invader cells) by producing antibodies. Lymphocytes remember pathogens, and once they have met a specific pathogen, they are quick to remember and create the appropriate antibodies so you don't get sick again.

* Antibodies are shaped like the letter Y. The top ends of the Y shaped cell are custom fitted so they can attach to the specific antigen markers of each particular pathogen. You may think of the pathogen's marker as a lock, and the specially shaped top of the Y shaped antibody as a key. When the antibody has attached to the pathogen's antigen, it renders it harmless. It also may act to clump the pathogens together so its easier for phagocytes to eat them.

* Antibodies take time to be created, so the first time a pathogen is introduced it may get the upper hand and do damage. When this happens, we become sick. When we're well, those pathogen specific antibodies will remain in the bloodstream, keeping watch for more pathogens to attach to. This is why we become sick once with a disease, then not again, or not as sick as the first time. Our bodies have built antibodies against it from the first illness, and it is said that we have become 'immune' to it.

* If you want to see what would happen when your immune system fails, consider what happens when something dies. Its immune system stops working, and the body is quickly invaded by bacteria, mold, fungus, parasites, etc. This is part of the same thing that would happen to us if our immune system failed.

For more information on immune system basics, check out these interesting pages:

Understanding Autoimmune Diseases...
Discovery Health - How your immune system works
The microbial world

To share this post in your communities, please use this hand, short url:

Views: 653
Comment by asburyparkangel on October 18, 2010 at 5:31pm
WOW, thanks Ellen for this informative POST. Excellent. We should all take heed to this one. I'd like to pass this oen to everyone on Face Book:)
Comment by Ellen S on October 18, 2010 at 9:38pm
Awesome - thank you so much!!! <3
Comment by Kelly Young on October 18, 2010 at 11:04pm
Fantastic work Ellen.

Friday, October 15, 2010

What's wrong? 8,000 visitors, and only 1,500 took action

Thank you to those who shared about and joined many of us in participating in the Virtual March on Washington during September's Pain Awareness Month. Your voices were heard. You're making a difference.
The American Pain Foundation tells us that this September was the best yet for pain awareness. A recent press release stated,

"The Virtual March received more than 8,000 visitors and over 1,500 people took action by joining the march, sending letters to their legislators and submitting comments to the FDA regarding Risk Evaluation and Mitigation Strategies (REMS). Seventy-three collaborating organizations endorsed the march and utilized their resources to help spread the word and raise awareness. Thank you for helping to alert our legislators to this critical healthcare crisis and request their help for change."

Thank you indeed!

But let's take just a moment to look at those numbers. 8,000 visitors, and only 1,500 took the time (from several seconds to a few minutes) to DO something about improving pain policy, even when the APF provided them with links and a pre-written form that only needed their name and a click on the send button.

The Butterfly Effect

The Butterfly Effect says that, when a butterfly flaps its wings in a field in here, he may cause a hurricane somewhere across the world. (Now, hold that thought...)

So, why the numbers disparity?

I participated in a group not too long ago, in which a Health Activist stated frustration with some of her community members. I was a little shocked when she used the dreaded words "whine" and "whiners". I thought her perhaps a little callous, until she told us that for all those hundreds of people complaining, a dismal handful chose to actually do something about their situation by becoming active in creating awareness in Washington DC for their condition or even with their local legislators during a recent legislative awareness campaign.

What does action really mean?

Alicia Stales has been talking quite a bit about the pinkification of breast cancer. People assume that if they buy something pink they are helping find a cure for the disease, when in fact the results are not being seen. It allows people to be passive. They thought about it. They spent a couple bucks and now get to wear something everyone recognizes that says they care, but what did they really do? If we buy something pink we tend to feel like we've done our part, and that's enough.

I think we can do better.

Make our whines matter!

There are plenty of ways to make your voice heard where it matters. Contacting your legislators used to be difficult before the internet. Now it takes only a couple key punches and the deed is done. The APF says:

"It is the job of your legislators to represent the interests of their constituents. It is your job to make those interests known! The first step to getting involved in policy or legislative advocacy is to
identify your representatives. Who are your national and state
representatives? Go to and enter your zip code to find these answers."

Sites like the American Pain Foundation have special places to go to learn how to advocate, regardless if chronic pain is your health passion. As a matter of fact, they even provide you with a kit that makes it easy for anyone to step up to the plate. If that wasn't enough, try this link for helpful tips what to say and do when you contact your legislator.

If you happen to be a chronic pain patient, consider letting your voice be heard in the 10,000 voices campaign. Tell your story here.

But, the easiest thing of all, is getting involved when you are contacted by an organization near and dear to your Health Activist's heart. Take 60 seconds to click on the links they provide and send that email to your congressman/woman. Then, share the link with others in your communities. You may not think that what you've done is important, but it is. You may be one by yourself and change someone's mind because they didn't know something you sh owed them. You may be part of 8000 people who send 8000 emails, and the sheer number of us all causes a change.

You may be the butterfly...
Comment by Teri Robert on October 16, 2010 at 1:11pm
Great post, Ellen!

I'll openly admit that I may be the activist you mentioned. I'm always glad to help people, but we all have to help ourselves too. In one case where the Alliance for Headache Disorders Advocacy had an action alert, I emailed over 25,000 people - literally - and asked them to take just 10 minutes or less to follow a link and send an email to Congress. Fewer than 1,000 did it. If we can't count on each other to work to make things better, who can we count on?

Comment by Ellen S on October 16, 2010 at 9:12pm

Thanks so much for the reply of helpful statistics. While its true that some may choose to contact their congressmen/women without the use of that link, I think that number is probably minutely small when contrasted with that 25,000 number. It is my great hope that perhaps by letting patients actually get a feel for just how few really are participating (not that 1000 is a small number, it's just small in comparison) maybe we can see a change over the next few months or years. I'll add just a touch more to what you said - after all, if those of us who are patients don't even want to take out that 2 minutes time to help ourselves, why should anyone else?
Comment by Teri Robert on October 16, 2010 at 10:58pm
Thanks, Ellen. We are very much on the same page.
Comment by Spurtler on October 19, 2010 at 6:23pm
Whining is Very Good

I think there can be whining and positive result. The treatment of complex diseases covers a multitude of linked mini systems and processes from recognising and documenting your symptoms through to daily maintenance and management of a diagnosed or undiagnosed condition. There are many steps between these two poles.

As people whine they intrinsically define problems, or more accurately, the scope of problems. Most corporate marketers welcome the knowledge of their customers' perceived scope of problems. It permits them to create solutions which can be marketed.

But lets not beat ourselves up too much. Not all posts are whines; many are solutions, advice, tips, tools and checklists.

I suggest that we create a new group, perhaps called "Patient POV" the purpose of which is to provide a forum for documenting things that are working and things that are not working from a patient perspective. There are already a huge number of posts that would qualify as relevant to this Patient Point of View Group. If we could add the discipline of not mentioning the names of Doctors who have not been able to help it might be a very useful contribution for commercial enterprises to monitor and aid the definition of problems that require solutions.

Review of the whines could permit the allocation of each whine to the mini processes mentioned above to provide relevance and clarity.
Comment by Teri Robert on October 19, 2010 at 6:39pm
I tend to look at "whining" this way... When we talk to someone or post and express our frustrations, fears, etc., then get proactive and work to do something about it, that's venting. Venting without proactively trying to do something about the issues or problems is "whining." To me, there's a big difference, and that difference lies in whether we're going to look for ways to help ourselves or sit back and wait for someone else to do it. Does that make sense?
Comment by Amy K on October 19, 2010 at 7:11pm
Awesome post Ellen. Not only are you addressing the issue but really giving others easy ways to be active and move beyond our idleness.

Thank you for the ease and grace you bring to health activism!
Comment by Spurtler on October 20, 2010 at 11:36am
TeriRobert: I'm quite a stickler for language because it makes one think more deeply about issue fundamentals by trying to find the words that most represent the situation. However, in this case, I don't give a fig for differences between "whining" and "venting". The words that I have a keen interest in are "individuals" and "groups". There is a potential power in this WEGO group which I do not think is being realised. It has frustrated me continuously since I joined about three months ago. This group, acting as a team, holds a great deal of information, experience and influence, all of which could be used to better effect.

What seems to be missing are the leaders who can marshall the energy of synergystic "individuals" to act as a cohesive "group" - a team.

The team would need goals and objectives and implementation plans. These would give the whining and venting structure and form and remove the randomness. They would also give the whiners a good reason to whine, or vent, because it would be withing a process that is to ensure the betterment of the group.

I've done some publich speaking in the past. With practice it is quite easy to "hold a room". I have not found any examples of social media that "hold a room" other than blogging - and you can't see the eyes of the reader.

The bottom line is that whining/venting is useful in context and useless outwith the appropriate context. WEGO provides the context up to a point. We, the activists, must provide the action component. That is not WEGO's objective. However, it should be our!
Comment by Teri Robert on October 20, 2010 at 11:47am
Sputler, I never said that whining/venting isn't useful. I stand by what I said about there being a difference. Looking at Ellen's original post, I think she understood what I was saying.

I'll take my leave now and leave this to you. I don't really need to be scolded. I do my share to help Migraineurs.
Comment by Marie on October 20, 2010 at 3:49pm
Ellen, thank you so much for sharing this post with the community - I think there's a very powerful message here, and you and Teri have really honed in on something that I think is one of the biggest challenges of any online health community, that question of how we can translate online engagement and conversation into offline action and activism.

I really liked your comment, Ellen, about asking ourselves: if we won't stand up and take action - how can we expect anyone else to? It's what being an empowered patient is all about, right? We all have to advocate for our own health and wellbeing, or for our loved ones - no one else is going to do it for us.

At any rate, I think this is an issue many, many organizations are facing right now. I'd love to hear from Health Activists who have been involved in very successful awareness or advocacy campaigns like this - what do you think caused those initiatives to be so successful?

To Spurtler's point about context and the structures that allow these conversations to take place and be most helpful, I think there may be some other impressive health communities that have really honed in on crowdsourcing this information. I'd strongly encourage folks to check out Patients Like Me, where individuals can track all kinds of data and statistics related to the health topics they're living with - in addition to creating a personal record for yourself, you can view the information submitted by others, and also see the most common symptoms or medications for individuals living with your health condition. CureTogether is another online community with a similar focus, though I think they look more at uncovering new patterns and comorbities between conditions. I've started a discussion in our Forum for anyone who's interested in sharing any additional resources and communities that have this focus.
Comment by Spurtler on October 20, 2010 at 6:21pm
I apologise to TeriRobert for my careless words. They were never meant to be cruel and on rereading I undertand why you are hurt. Please forgive me.
Comment by Teri Robert on October 21, 2010 at 10:54am
Thank you, Spurtler. Of course, I forgive you.
Comment by Ellen S on October 21, 2010 at 7:47pm
I've been away a couple days, and glad to see the conversation continuing :) Thank you so much Anthony and Amy. You guys are the best! Thanks too for apologizing Spurtler. Also, yes Teri, I do think we're definitely both on the same page. Marie asks some really interesting questions too. Will have to go check out her links. Thanks everybody for some great things to think about!

Thursday, October 14, 2010

The Chronic Illness Lifestyle

I'm starting to think of my new way of living as just another lifestyle. Of course, it's taken about 30 yrs to figure out that I'm never going to be 'normal' again and to finally make my peace with the way things are.

I'm curious if others would mind describing the differences of their chronic illness lifestyle...

Here's some of mine:

* I usually wake up alone. Hubs wants me to sleep as long as possible because my nights can be rough, so he goes to sleep with me, then sneaks off in the night to the "other bed" aka the couch because he can't sleep with my constant movement as I try to get comfortable. If I need him I call the house phone and he magically appears. He's gone to work by the time I'm awake.

* I need special stuff. Special definitely does not mean better, just different. This includes shoes, clothes, meds, food, drink, light bulbs, computer monitor and keyboard, glasses, music, phones, bedding, floor plan to my house, home location, furnace type, door handles, air filters, car, and the special sign on my door that says "Oxygen in Use". Well, you get it.

* I cannot survive without my meds or a heating pad.

* I carry an emergency case that describes my medical conditions and contains emergency meds with instructions. A small supply of daily meds in case I forget to take something or get stuck somewhere. This is usually inside another bag where lotion is ever present, as is something for my peeling lips. Sunscreen is always there, as is an assortment of sunglasses and reading glasses with tinted lenses. My phone is my lifeline. A hair tie in case the wind blows, this keeps it from triggering Trigeminal Neuralgia (TN) across my face. Cotton balls for my ears to prevent triggering neuralgia inside my ear and down my throat. My "Butt-cup" aka Back Joy which helps my posture and allows me to drive distances and still be able to stand up afterwards. Gloves for my Raynauds. Purell because everything makes me sick. Something to snack on to keep blood sugar where it needs to be.

* There is a single magnet on my refrigerator that tells emergency personnel where to find my emergency information.

* My car looks like we're homeless. It always holds a neck pillow and at least one blanket, a towel, at least one spare coat or sweater, and an emergency kit in the glove box. If you peer inside and find an ice cream bucket with a lid you'll know it's been a bad Migraine week/month/year.

* Hubs does the shopping so I don't have to get out in the sun and fluorescent lights.

* I wear dark sunglasses, indoors and out. Home is about the only place I can go without them because we have special windows and have arranged the lighting so that it doesn't tend to trigger Migraines for me. I've learned it's okay to answer the question "Why don't you take those sunglasses off - it's dark now" with the simple answer "I can't".

* I work from home. Without this option I would be unemployable.

* I no longer wear dresses or skirts unless they are very long, or its winter and I can get by wearing tights. Varicose veins and rashes are distracting to others, and they just don't look right without heels.

* I don't wear makeup much anymore. I don't have much call to look beautiful for anyone unless it's date night :) and my radically changing skin has me at a current loss for anything that looks good on me. Sometimes less is best. I'm okay with letting the inside overcome the sometimes shocking package outside. I just tell Hubs to take off his glasses and he thinks I look great :)

* I rarely wear shoes now unless I'm going somewhere or my back is especially bad. Sometimes they trigger Dystonic spasms in my feet, and if it's a bad week/month I'm better off bare or stocking footed.

* My company at home is my entourage of pets. They keep me going and functioning, so I tend to be somewhat unapologetic about them. I'm no cat-lady, but they're important to me. They follow me everywhere and I look like a momma duck and her ducklings. I owe them more than I can repay, so don't look at me funny when you realize they are old and I spend time and money on their medical care. I'm teaching my kids the value of growing old and taking care of worn-out things, both animals and people.

* Sometimes I don't answer the phone, and sometimes I don't come out to visit. If I feel well enough I will do my best, even if that means opening up the door with a smile on my bedhead, and jammies on. Friends and family are always welcome in our home, but are expected to understand this.

* Dealing with medical bills and the insurance company is a day to day struggle. I know our insurance company is trying to wear us down, but we'll not let them win. I take this as a personal challenge, and it is my other part time job.

* Doctor visits are considered "going out", and are usually followed by a decent meal at a restaurant which serves something I can eat.

* We've learned how to handle doctor appointments and hospital visits with drillteam precision and lose tolerance for being treated like newbies.

* We will sometimes have hushed dinner conversation with other chronically ill patients about unsavory topics and not roll an eye, and we quietly chuckle when someone at the next table asks to be moved because we got too technical in our discussion.

* I've learned how to answer the question "How are you" truthfully without going into detail.

* Sometimes disappointment comes our way. Friends and family let us down because they don't understand. Hubs and I are a team and it will always be that way - we have each other. In the end we have learned that has to be enough.

So, what is new in your life since you became chronically ill?
Comment by amanda on October 15, 2010 at 4:00pm
Thanks for sharing this Ellen. You're such a strong person - you have so much to deal with! I think your honesty is so admirable. This is a great discussion topic for people to bring up in their chronic illness communities!
Comment by asburyparkangel on October 18, 2010 at 5:47pm
Wow, girl...yes you are courageous. You've got me beat by a LONG run. I wonder how some of you do it. I guess I thank The LORD everyday that UI can do so mcuh with all teh HELL my bodies been through. I will be praying for a brerk through for you, Ellen. And thank YOU so much for the awesome, timely & time consuming paosts. You should be a health counslour!
Comment by Amigos da Cura on October 21, 2010 at 3:58pm
Comment by Ellen S on October 23, 2010 at 8:40pm
asburyparkangel - Thank you Dearie :) You should add your list of things in your life that have changed. Tell us about your new normal. I would love to see how somebody else deals with everyday things...

Saturday, October 9, 2010

11 Surprises About Your Bones

You probably already know that:

Your bones act as the framework for the rest of your body. They support your muscles and protect your organs. Without your bones, you'd be a formless blob. Bones contain minerals like calcium, and drinking calcium rich milk and eating calcium rich foods are vital for good bone formation.

Here are some things you probably don't know about your bones:

1. The bones you had 5 years ago are not the bones you have today. Your bones are constantly being broken down and rebuilt. This is called remodeling and is how your body keeps them healthy. Without remodeling, bones become fragile because damaged bone doesn't have the opportunity to be replaced by healthy new bone.

2. Osteoporosis is not a natural part of aging. There are many things you can do to prevent osteoporosis, and the sooner you begin protecting your bones, the less chance you'll have to deal with osteoporosis later in life. Watch your diet, get plenty of vitamin D via sunshine, and daily exercise.

3. The body is very frugal. If you don't use it, you'll lose it. This is why, all other factors being equal, weight bearing exercise is the single most important part of maintaining bone health.

4. Once you lose bone density, you can rebuild it. The best way to do this is to be sure you're getting enough of the proper minerals required for building bone, as well as vitamin D and exercise.

5. There are glands that are responsible for bone remodeling. They're called Parathyroid glands. The lie against your thyroid gland in your neck and release a special hormone called parathyroid hormone that controls the amount of calcium that is removed from your bones into your blood stream.

6. By the year 2020 it is estimated that without treatment, half of the population aged 50 yrs or older will suffer from Osteoporosis.

7. Boron used to be considered a non-essential mineral, but research is linking it with the ability to slow the breakdown of bone. Boron plays an important roll in the metabolism of magnesium and calcium and is essential for the body to convert and utilize vitamin D. Because we didn't know this before, there are no established recommended amounts of boron for the diet. Boron is easy to get in fruits vegetables and nuts, and a serious overdose of boron can be fatal.

8. Magnesium is the most abundant mineral in the body, and over 50% of it is stored in the bones. Magnesium is equally important to the body for bone formation and maintenance, and over 300 chemical reactions in the body depend on it. Magnesium deficiency is very common.

9. Paget's disease occurs when the body begins to lay down more bone than it is able to remove. The bone is weak and this condition can be very painful.

10. There are 14 bones in your face alone!

11. A fun mneumonic for the bones of the spine is to remember the times that you eat throughout the day: 7, 12 and 5. There are 7 cervical vertebrae, 12 thoracic and 5 lumbar vertebrae.

Do you know any other fast bony facts to share?
Comment by Kelly Young on October 10, 2010 at 9:49am
I got one Ellen! 25% of your bones are in your feet. I cheated. It was in my newsletter. Haha. Thanks for the informative post. :D
Comment by Ellen S on October 11, 2010 at 2:02pm
Kelly - I think I missed the last newsletter o.0 Gonna have to go and check it out. This is a great one!! *Yikes* No wonder my feet hurt so much when I'm flaring...
Comment by Jamie on October 12, 2010 at 12:39am
Kelly, no wonder so much of my feet are falling apart!!!
Comment by beritk on October 18, 2010 at 3:39am
Well the bones are not the only one to change. The average neuron, consist of about 100,000 molecules. The brain is home to about 100 billion neurons and to think how many molecules. Each neuron gets about 10,000 connections from other cells in the brain. Within each neuron, the molecules are replaced about 10,000 times in an average life span. Still we continue to be us, with our thoughts and individual understanding..
Comment by Ellen S on October 18, 2010 at 9:40pm
Awesome info beritk - thanks so much for sharing it! That would make an awesome blog post topic all by itself!

Friday, October 8, 2010

Making our online communities safe from one-upmanship

When we're chronically ill we often feel that we're caught up in a tornado of chaos. No matter how long our disease process has been a part of our lives, part of us just simply can't believe everything we've been through. Our lives are a circus - full of craziness, chaos, and unbelievable occurrences. We want to share that part of our experience, often because we want to know we're not alone, or because we want to feel validated. Sometimes just because it's an incredible story and we're simply in disbelief ourselves. Many times this happens because those who are seeking online communities are the most sick and in need of the most help.

But what does this sharing of worst case or unbelievable experiences actually do within our groups? There may be some unintended consequences to this activity.

Here Dianne Reese mentions the prevalence of 'one-upmanship' within many groups keeping new members from feeling validated enough to participate. This is obviously not constructive to them or to our groups.

Okay, so we've shared an incredible story. Did we stop to consider how the wording of that story and the responses that follow, might affect new members who don't know us or who may be new to our disease? How did you feel when you were a newbie and ran into posts like this?

If some of the stories within our groups *might* appear to be one-upsmanship, that leaves us as leaders and moderators with a choice - how do we want to handle this type of post?

I would love to hear some of your ideas for options how we can:

A) more mindful of how we tell a story, keeping newbies in mind so our tales don't overwhelm them or read like tales of one-upsmanship.

B) ...respond effectively to these types of posts in a way that makes it okay to be new to the disease/disorder and that it's okay that we're not that seriously sick or injured - we are still an important member with a voice that others want to hear.

C) ...constructively call out these types of posts as the obvious - this is not the typical experience - while maintaining support for the author of said post so they still feel validated, while at the same time looking for a solution to the topic so we can all learn how to deal with that particular subject.

D) Any other ideas?

I sure don't have all the answers and I'm very interested in what other leaders have to say about the subject. Every once in a while as moderators we run into someone who has joined a group just to present themselves as the worst possible circumstance. Perhaps they need attention, perhaps they truly are looking for help. Sometimes they are trolls in sheeps clothing. If we are to be effective leaders, it is not our place to judge them unless they are being destructive to your group's "home" atmostphere, but to look for ways to ease their feelings and incorporate them into the group by talking with them and connecting them with others that might be able to help them deal with their situation. Our job is to guide a multitude of different types of personalities, and sometimes that means to redirect as well. Our job is also to be sure that the group feels like a home and a family to every member.

What are your tips and tricks to prevent one-upsmanship in your community?
Comment by Nicole on October 11, 2010 at 12:19pm
I really like this post. I think that the WEGO community is usually really good about this topic, although sometimes it does come up. I think that when writing blogs it's important to try to keep a tone of encouragement. Keeping that in mind can make your writing more positive in general. Sharing a story can be therapeutic, but we also should make sure that by sharing that story, we are keeping the community positive.
Comment by henryde on October 11, 2010 at 3:57pm
This is a timely post for me personally because I was accused of tone crimes in another community just because I asked a bunch of questions. It's hard because there is so much confusion out there, particularly when food allergies are involved. I guess I'm not really accustomed to the delicacy of people's feelings. I did apologize.
Comment by Janeen on October 11, 2010 at 5:01pm
This is such a tough subject, but an excellent topic. I'm so glad that you tackled it. I've seen this happen in my community and often. Even though most of us are working together for one cause, sometimes there has become a rub with certain "allergies" in the allergy community. It's almost like one allergy feels it's more severe than the others and therefore deserves more face time.
I know for me, I used to attend a local food allergy support group (and I enjoyed it, but my time commitments got the better of me) and when I'd say "My son is allergic to wheat, rye, barley, oat, eggs, milk, peanut and tree nuts" I sometimes felt like people thought I was trying to "one up" their one or two allergies. Believe me, it couldn't be further from the truth but I can see how they could preceive it to be so.
I agree with Nicole, it's always good to try to keep a tone of encouragement. The more positive you seem the better. It also helps if you are sympathetic and engaging to the other members. If you only pop into the community to "brag" about your issues or problems than you will be preceived as trying to "one up" everyone else.
Henry, sometimes if I'm asking a bunch of questions I might say something like "I apologize for all the questions, I"m just trying to learn from you all who seem to be so knowledgeable on this topic". Flattery seems to diffuse the situation. Or "I apologize for all the questions, I'm new here and just trying to get the lay of the land". Sometimes if you are new to a community and people don't know you yet, they may just need a little clarification.
Comment by henryde on October 11, 2010 at 5:40pm
Very tactful. Thanks.
Comment by Ellen S on October 12, 2010 at 5:57pm
Thanks Nicole and henryde, and Janeen, those are really excellent suggestions!! Even when I'm not new I think adding that little bit of flattery is always helpful - it's usually true too, or I wouldn't be there!
Comment by henryde on October 12, 2010 at 6:16pm
In that case, nice horse.
Comment by Nancy on October 17, 2010 at 1:56pm
Being new in this community, but not to Migraines/headache disorders, I think this is a wonderful topic. I remember quite vividly being a newbie and feeling absolutely alone. I often have to take a step back and remember that feeling. Thank you for the reminder....
Comment by Dianne Rees on October 17, 2010 at 6:58pm
I just wanted to give credit to Meg Fowler who brought up this point, though I agree group dynamics can really influence whether people feel comfortable enough to participate. People come to health communities for a variety of reasons and at different points in their lives and need to be able to express diverse opinions while having respect for the opinions of others. I think you made great suggestions in your post.
Comment by henryde on October 17, 2010 at 7:31pm
I am very glad that this thread continues. It is worrying to me that some bloggers are so aggressive with their own experience, which can't be comforting to the new and worried. I certainly don't want to aggravate their anxieties. I am merely a purveyor of conventional wisdom and in some cases that is a big help. I hate to see over-the-top bloggers fan the flames. I certainly try to avoid that myself.