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 www.congress.org 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...

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?

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?

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) ...be 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?

The RA Meme - My Answers

This meme is the first for RA and comes from my favorite RA Health Activist Kelly Young, the RAWarrior. You can find her page for the meme here.

So, grab a cup of coffee and sit down to contemplate your own answers while you read mine to the questions she poses. Maybe one of my answers will surprise you:

1. How many other diagnoses (co-morbidities) do you have?
   I cannot count them all. Ignorance is bliss.
2. When were you diagnosed?
   I still don't have a firm diagnosis. I'm told it doesn't matter, the treatment is the same as my other autoimmune diseases and I need to just learn to live with it.
3. How many Rheumatoid Arthritis treatments have you tried?
   It's been so long, I'm not sure how many. More than 5. If you count alternative stuff, more than 10.
4. What kind of a reward do you give yourself after taking any medicine that you hate?
   Hmm, reward - that's a good idea! Usually I have a water chaser - something else I really am not fond of consuming.
5. Who helps you open doors or jars when you need it?
   Whoever is around. I'm stubborn. I always try first. Big mistake *ouch* I feel anyone around me with good hands is fair game.
6. What would your ultimate good rheum doc do?
   Doc would insist pain be adequately treated and work with me diligently to that end.
7. What’s your favorite comfort for RA?
   Heating pad. A good pounding hot shower helps too, since I don't have a hottub. Daughter is in therapeutic massage school, so next year my answer will be - a massage!
8. What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis?
   Look for a doctor to help me get through it or, maybe trying to get adequate pain control to make my life livable. Both are arduous things to endure and I wouldn't wish it on anyone.
9. What’s your biggest RA-related fear?
   That the pain will become permanent and unbearable and there will be nothing left for me to try.
10. How many pills do you swallow every day?
    Only about 5 pills, give or take. Then there are the liquids, the shots and, well *other* ways of getting the other meds in me.
11. Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
    A bed so I can sleep through the night, which would help everything else too. Water therapy, specifically a hot tub. Massage therapy at least weekly.
12. What do you wish people knew about Rheumatoid Arthritis?
    That it is an autoimmune disease and that the pain does not go away, even with meds - provided we could get the pain meds we need in the first place. That it is such a terrible struggle for pain relief. That we have to make a conscious decision every day how to live our lives and manage to do it with the grace they see, despite the fight they cannot understand.
13. What would you like to say to your RA? I was taught it's impolite to swear in public o.0

Thank you Kelly for some great questions! I can't wait to see how others begin to answer them too...

To be, or not to be - health and the Good Samaritan Law

cenario 1 - A bystander is in a park where a child is having a life threatening anaphylactic reaction. The ETA on the ambulance is 15 minutes. The bystander carries their own epi-pen which could:

1) potentially save the child's life
2) potentially set him/herself up to be sued

The bystander has a choice - to step in and help, become a Good Samaritan... or not.

What would you do?

Many states have a law designed to protect those who may come upon a person needing emergency help. It's usually known as the Good Samaritan Law and it is designed to remove the fear they (the good Samaritan) may end up in court if things don't go quite right. These laws are in place so when you are a victim needing emergency action, those around you will not be afraid to help you.

Scenario 2 - A bystander who has had training as a First Responder is in a park where a child is having a life threatening anaphylactic reaction. The ETA on the ambulance is 15 minutes. The bystander carries their own
epi-pen which could:

1) potentially save the child's life
2) potentially set him/herself up to be sued

What would you do?

Either scenario could end in a legal nightmare. How much of a nightmare depends upon the particular laws of your state.

Scenario 1 - In my state, not only could I be in trouble for using my own epi-pen on someone else (it is a prescription drug) but I would be doing it as a 'non-trained' medical person. No matter that I know how to use the epi-pen from my personal experience, I am not a doctor or nurse.

Scenario 2 - In my state, not only could I, as a First Responder be in trouble for using my own epi-pen on someone else, but because I am not a nurse or doctor I am restricted from giving any medications to a patient - even their own. I cannot even give sugar to a diabetic in an emergency, or a heart attack victim his own nitro tablet.

While going through First Responder training, we debated this very situation. Legally it is a nightmare situation, but most importantly to me, morally it is a nightmare. I was honest and told my instructor that I was not sure I could stand by and watch someone die when I had something to help them in the bag at my side. Her response was that there was no way she could tell us it was okay to help someone in this situation. I can however, find someone else to administer the diabetic's dextrose to him/her, or that cardiac patient their nitro (preferably a family member), or if the anaphylactic child has an epi-pen and I can find someone else who will actually stick the child, or the child can stick him/herself with their own pen... then we are okay. The trick is finding someone who is ready to take on the legal implications of being that Good Samaritan.

At the same time, my instructor emphasized, that to avoid legal problems, remember to always do what is in the patient's best interest at the time.

Hmmm... To me this is the very definition of a dichotomy.

To me this is an unthinkable situation, yet many of my fellow responders have stories to tell when they were faced with just such a situation. Only one ended in litigation, but when you are that one person it's everything to you. Defending yourself in a lawsuit, even a bogus suit, is expensive - - life changing expensive. You risk everything you and your family has.

So, what do you do. The child can't breathe. He is blue. In 15 minutes he will likely be dead. You have 60 seconds to make up your mind...

Do you give the injection and take the risk? Why or why not? What are your thoughts?

5 Tips for the Newly Diagnosed Chronic Illness

As a Health Activist who tries to be active in several online areas, I have found through the years that I find myself saying many of the same things over and over again. It's not that I'm being pushy or have an agenda... well, perhaps I guess I do.

I see patients suffering, especially in the initial stages of diagnosis. When I've been there and done that I don't want to see them have to go through the same trials and errors, so I try hard to pass on the information that changed my own life, and could change theirs...

My 5 tips for the newly diagnosed chronic patient

1. Ask for and keep paper copies of all doctor's office visits, but especially lab reports and imaging reports.

Stash them away in a special folder with your name on it, or a three ringed binder for future reference. Because you have done this, you will no longer have to wait for precious records to be transferred in case of emergency or physician change. Sometimes labs and records are misplaced. Sometimes bloodwork accidentally wasn't run at all. With this information you can check back knowing what labs should have been done and cross reference with those that you have results for. You may notice flags that were not seen in your doctor's quick once-over and this gives you the opportunity to ask about them. You will know nothing has been missed or overlooked. Two weeks is usually plenty of time for all labs to come in and be reviewed, so make it a habit to call for copies then. You can keep an eye on your progress and will be more likely to notice patterns than either your doctor or their staff. You are the expert of you. My doctors know that when my labs come in, I will ask for a faxed copy to be sent to me. It has become automatic for them to do this.

If you have trouble getting these reports, usually asking the staff "Have you read the HIPAA laws recently?" ... is all that is necessary to get quick action. That being said, I've had to go as far as hold payment of my bill hostage more than once, and even contact the CEO of the major metropolitan hospital in order to finally get the needed records. Don't be afraid and don't be intimidated. Sometimes making like a bag of cement in a doctor's office (show up, sit down, and don't leave until you get what you came for) and standing up periodically in the busy office (full of other patients) to politely ask "Are my records ready yet?" is enough. Office staff will not want to be impolite to you in front of other patients.

For more information how to make your own Personal Health Control Journal, see this series.

2. Maintain a list of current medications and allergies, or past or present medical conditions.

As a first responder this is always the second thing we ask for. Knowing what medications are being taken, when they were last taken, and any allergies (yes, this includes foods, inhalents, contact allergies etc) can be life-saving. Keep the list as the front page in your records binder or folder for quick and easy reference, and don't forget to update them regularly. The list should include current dosages and the times these medicines are usually taken too. Medical history is vital, vital, vital. Knowing that an out of breath patient had chest pains a month ago, or that a stroke patient banged their head last week could be vital clues you may not think are relevant, but your doctor will be able to piece together to determine appropriate testing or treatment.

If you have had adverse reactions (not allergy) to medications, keeping a list of these reactions and what caused them can also be very important. Knowing what medications you have had in the past that didn't work for your condition may seem superfluous, but after 10 yrs time goes by, you will be hard pressed to remember them yourself without prompting. This knowledge can save much time and money later.

3. Take a list of questions and/or concerns to your office visit.

Tell your doctor the list, or give it to him/her at the beginning. At the end of the visit, go back through and very quickly reiterate the answers from top to bottom to be sure you understand instructions correctly. Don't hesitate to ask the doctor to write the answers for you as you run thru the list, or write them down yourself.

The average office visit is from about 7 - 15 minutes. A little small-talk is important so you and the doctor can get to know each other, but the biggest mistake most patients make is in waiting until the doctor's hand is on the doorknob before getting to the real reason for the visit. This is exasperating for your doctor who at once wants to be helpful to you, but is also trying to be mindful of his other patients and their needs. This list will help to keep you both on task.

4. Bring a personal advocate with you... or a micro-recorder.

A personal advocate is a friend or relative, or even a neighbor. I've written about personal advocates in more detail here. In short, an advocate's job is to sit by you during the visit and write things down. They should be able to help you remember questions to ask and any important details. They can hold your hand if you need it. They are there to back you up when you tell the doctor something that may be confusing. Doctors who tend to be rude will be less likely to show that side when there is someone else in the room. The same goes for patients. Advocates can help to make the entire visit go more smoothly.

If you have no one to go with you as an advocate, be sure to bring a micro-recorder. Each state has different laws dictating the use of these devices for legal purposes, but most doctors will be very open to their use if you tell them at the beginning of the visit that you are using one to help you remember what is said. If the doctor is not open to using one, my advice is to get another doctor.

5. Remember that your doctor is a human being first, and a physician second.

Being human means we make mistakes. We get frustrated at times, even angry. We appreciate being appreciated. We have lives outside our work, and families too. We need a little off-time every once in a while. Sometimes we need to vent. We have good days and bad days. We are not perfect, although we all do try.

I urge all chronically ill patients to remember that most doctors want to heal us. When we have a disease or disorder that can't be cured, it is frustrating for patient and their doctor. It is common for a doctor to see particular names on his schedule for the day and begin to dread those visits - not because he dislikes the patient, but because he feels helpless to fix the problem. His job is to fix things, and he can't.

Patients, use small-talk to find out your doctor's birthday and send him a card or a batch of cookies. When his anniversary rolls around, drop off a rose to the office. When Christmas/Hanukkah/Quanza etc season is here, thoughtfully wrap something up and give it to your doctor and his staff. Cards are great too - anything to acknowledge the people and the effort that goes into your care.

Got a difficult doctor with disrespectful staff? These are the offices that need these personal touches the most. You want to be remembered for good things, so do something memorable! You want them to look forward to your visits? Then do something that gives them a moment of joy and happiness while you're there. It's not difficult!


This post is my September entry in the Health Activist Blog Carnival. If you're interested in participating too, you can read all about here: http://blog.wegohealth.com/2010/09/new-health-activist-blog-carnival-back.html