United We MUST BE...

Over the last few days I've been thinking about all of the movements across the United States. There's M.A.D.D, Susan G. Komen 3-Day for the Cure,and more recent there is the Tea Party movement, and so many more grass roots are starting up all over America. These people,are no different than you or I, they are people with a desire to help make change, people willing to research, write letters, make phone calls, set up retreats, and conferences across the United States to educate their people and anyone else willing to listen to their cause. I've seen a lot of your posts on facebook, my space, my in box, other chronic pain web pages all have our stories posted on them telling anyone willing to take the time, of the horrible pain we each live with, how unfair the majority of us with chronic pain are treated by the medical professionals, friends, co-workers, and even our own family members.

Were no different than any of these/those organizations/movements, we just need to organize. We don't need to re-invite the wheel, we may need to fix a few spokes here and there! But its nothing we cannot handle and or do TOGETHER!


In the Face of Pain

provides us with a series of tools to advocate for people in pain. You can learn the basics of how to share messages about the rights of people in pain through your community, your local media outlets, your elected officials and your professional organizations.


You will also have access to current data and statistics about conditions or population-specific pain that can be used to support your advocacy efforts. Lastly, you have the capability to build a personalized advocacy plan, tailored to your specific interests.
How to Advocate Through:

Legislative Bodies
The Media
Community Organizations
Professional Organizations
Research
Access to Optimal and Affordable Care

Other Helpful Resources

Build Your Own Advocacy Plan
Research Data, Statistics and Resources
Pain Management News


There are 76 Million Americans that suffer with some form of chronic pain. What about the one's who are told everyone has a little pain, no pain no gain, its all in your head, and the other excuses we've all heard.

I saw this written not to long ago,

"If not us, then who? If not now, then when?


The time is now, will we be heard? It's up too us....

I am not a Criminal

I recently made a mistake that I’m sure everyone of us has done some time during our life. I had a doctor’s appointment for Feb. 16^th, I made the mistake of switching the six and the nine, thinking my appointment was for the 19^th. When I woke up on the 19^th, I wanted to double check the appointment time and that is when I realized what I had done. I immediately called the doctors office to see if they could get me in. They could not as my doctor had gone out of town.

Well at one time in my life that would not have been no big deal, but I now suffer from a chronic pain condition called Complex Regional Pain Syndrome (CRPS) For this condition I take two kinds of opioid pain medications, these have to be written out each month with NO refills. So once a month my husband (John) drives me to my doctors appointments.

I know that missing a doctor’s appointment is very complicated for me. This was MY mistake and I accept that.

What I have a problem with is a local hospital here in my town. After four days of trying to deal with this by myself and my pour husband, along with the extreme pain, at 6:30 am am my husband was awaken because I was rolling on the floor crying and in a lot of pain. My husband drove me to the hospital, I was checked in right away!

The doctor came in, I explained the mistake that I had made. About my condition and what medications I’ve been taking for the last nine years, he said he was very sorry, but the hospital policy would not allow him to prescribe pain medications to me/chronic pain patients.

I know that this is because of the ones who take advantage of the system and doctor and hospital shop, and or buy them illegally. He went and called my doctors office, spoke with the nurse who confirmed that I was a patient there and that I had missed my appointment, and that the doctor was out of town. The doctor came back and told me he was going out on a limb, and he cold get into a lot of trouble, but he was prescribing me enough of the two medications I needed to get me by until March 1^st, even though I told him I could not see my doctor until the 4^th of March. He was very stern and said “I never want to see you here again in this situation.” If he would have looked at my records he would have seen the last time I had to go to the ER for out of control pain was over five years ago!

I do everything I possible can to avoid going to the hospital, or to a pharmacy because I hate being treated like I’m a criminal, a pill popper, a druggie.

I do everything I possible can to avoid going to the hospital, because I’m sick and tired of going there, or to a pharmacy and being treated like I’m a criminal, a pill popper, a druggie. Funny when a criminal is arrested for breaking the law he gets a court appointed attorney, and remains innocent until proven guilty. According to The Joint Commission, (JACHO) every patient has rights!

According to The Joint Commission, (Jacho) http://www.jointcommission.org/ every patient has rights!

· You have the right to be informed about the care you will receive.

You have the right to get information about your care in your language.

You have the right to make decisions about your care, including refusing care.

You have the right to know the names of the caregivers who treat you.

· You have the right to safe care.

· You have the right to have your pain treated.

· You have the right to know when something goes wrong with your care.

· You have the right to get an up-to-date list of all of your current medicines.

· You have the right to be listened to.

· You have the right to be treated with courtesy and respect.

What is your role in your health care?

· You should be active in your health care.

· You should ask questions.

· You should pay attention to the instructions given to you by your caregivers.

· Follow the instructions.

· You should share as much information as possible about your health with your caregivers.

· give them an up-to-date list of your medicines. And remind them about your allergies.

http://www.jointcommission.org/GeneralPublic/Complaint/

Do you have a complaint about the quality of care at a Joint Commission-accredited health care organization? The Joint Commission wants to know about it. Submit your complaint online or send it to us by mail, fax, or e-mail. Summarize the issues in one to two pages and include the name, street address, city, and state of the health care organization.

The Joint Commission encourages anyone who has concerns or complaints about the safety and quality of care to bring those concerns or complaints first to the attention of the health care organization’s leaders, which will often lead to more immediate resolution of the matter. Matters concerning billing, insurance, payment disputes, individual personnel or labor relations issues are not within The Joint Commission’s scope. Also, The Joint Commission does not review complaints of any kind in unaccredited organizations.

When submitting a complaint to The Joint Commission about an accredited organization, you may either provide your name and contact information or submit your complaint anonymously. Providing your name and contact information enables The Joint Commission to inform you about the actions taken in response to your complaint, and also to contact you should additional information be needed.

It is our policy to treat your name as confidential information and not to disclose it to any other party. However, it may be necessary to share the complaint with the subject organization in the course of a complaint investigation.

The Joint Commission policy forbids accredited organizations from taking retaliatory actions against employees for having reported quality of care concerns to The Joint Commission.

E-Mail:
complaint@jointcommission.org

Fax:
Office of Quality Monitoring
(630) 792-5636

Mail:
Office of Quality Monitoring
The Joint Commission
One Renaissance Boulevard
Oakbrook Terrace, IL 60181

If you have questions about how to file your complaint, you may contact the Joint Commission at this toll free U.S. telephone number, 8:30 to 5 p.m., Central Time, weekdays.

(800) 994-6610

I am truly grateful for this doctor this morning, and his willingness to treat me he did give me some medicine, I could have done with out the lecture but all in all I’m finally starting to feel better.

Carol Rains

The American Chronic Pain Association (ACPA)

There is Hope...for Chronic Pain
In the Face of Pain

RSDSA

Caring for Those with RSD/CRPS

Public Testimony: Don Bivens, MD

Public Testimony: Don Bivens, MD

Today is OK

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Well its Groundhogs day, and looks like we were suppose to have 6 more weeks of winter. I can not wait! I love spring and summer, for so many reasons. I love the flowers that grow, a warm sunny day, working in the yard-pulling weeds-planting-BBQ-family and friends! From the first frost in the fall to the last frost in the spring I look forward to warmer days. With warmer days and nights for me comes fewer pain flare ups, this is always a plus. The cold fall days and winter nights make for long painful days. The depression seems to be hanging over me like a thick London fog, at times leaving me feeling like there is never going to be another day, and sometimes wishing this was true. If living with this monster was not enough of a curse, then you have life to deal with! You know like the kids, a spouse, pets, bills, traffic, family, house work, your boss, - the kids, a spouse, pets, bills, traffic, family, house work, your boss, its like it never ends!!!

Today were visiting with two of our grandchildren Paige is 8, and Kaiden is 5, they are from Fort Collins CO. I can't believe how much they've grown! They will be here a few more days, seeing them and watching them makes me so happy!

I'm enjoying the facebook group page I started in December 2009, this morning I saw the group has grown to 200 members! I enjoy researching chronic pain stories, and treatments and then sharing them with the group. I enjoy reading how others deal with their day to day lives.

For me having my husband John with me or at least near me, during a flare or really any time is such a comfort, as a person who lives with daily pain, I am so thankful for John, and my children who are always there for me. I know life at times can be extremely difficult for John, when I'm not feeling well he tries so hard to take care of all my needs. All though like any couple there are those days when I would like to stuff him in a closet or something!!! But I still love him!