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....

Today is OK

Image via Wikipedia

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!

Marriage Issues Related To Chronic Pain

Below is the article I wanted to share, after living with RSD/CRPS now for almost 11 years, my husband John and I have had our share of problems, and have we've even discussed divorce a few times. Life with RSD is not easy for us with it, but I think we do need to try and remember to be more patient with those we love. I hope you enjoy this, for more information see their web site http://www.families-and-chronic-pain.com/index.html

Marriage issues are one of the most important issues for a couple dealing with chronic pain. Couples are together more and ‘my time’ and ‘my space’ is disrupted. You are used to things as they were and everything has changed.
The love is there, but the space is gone. You ultimately spend more time together now and with the chronic pain. It makes a significant change in the relationship that wasn’t there before.

Marriage issues arise in many different ways. I know every relationship is different but there are some factors that need to be considered.

Due to the chronic pain, the effect on your relationship will be due, to the intensity and frequency of the pain as well as the severity of the disability. For someone with the occasional migraine headache, the impact is minimal.

Those that sustain a severe injury and are in constant pain, this is different. Things are very different. They are unable to work, they feel like they have let their family down and the pain is a constant reminder. This can cause a significant change in your lifestyle.

Remember that, no two couples will cope with the same situation in the same way. Some will find it more than they can handle and question whether, they will be able to cope with the stress this will bring on them and the family. Others will take it all in stride and adjust to the changes with ease. It just depends on the couple.

Communication in marriage is so important for it’s survival. Without it , the silent treatment will occur and very little can be accomplished. An unhappy marriage is always fixable. You can get couples therapy, visiting with your clergy, individual therapy, bend a friends ear or just sit down and have a good cry.

Having a church family to depend on, also helps. Friends in a church family could be the ones that will help you the most. They are good listeners and will do anything to help. They will hold you when you cry and rejoice with you in times of victory.
TALK, TALK, TALK
Never, ever let communication be used as a weapon. Silence is not golden in this situation, unless divorce is the outlet you want to follow.

No one really has the right answers to marriage problems but, chronic pain will surely test the strength of a marriage.

Encountering Barriers on the Road to Pain Management

Pain is the top reason people seek medical care in the Despite all we now know about pain, many people continue to suffer needlessly.
Wednesday August 12th, 2009



(NewsUSA) - That's because there can be "road blocks" to effective treatment. These can come from a variety of sources - including healthcare professionals and even patients themselves.



While controlling pain hasn't always been a medical priority, the healthcare industry has made great strides in recent years to address this - including the establishment of pain as the "the fifth vital sign." Nevertheless, people seeking treatment may still encounter healthcare professionals who do not take pain seriously, or who do not understand how to provide proper pain management. This can result in inadequate treatment.



"It's important that people with pain find a healthcare professional who understands their needs and is willing to work together to determine what treatment option works best," says Penney Cowan, founder of the American Chronic Pain Association. "With the right care and direction, you can live a full life."



One of the most challenging barriers to adequate pain relief also can come from the people with pain themselves. Some may resist taking pain relievers because of fears of side effects associated with strong prescription medications - it is important to discuss these concerns with a physician. Attitudes toward pain and suffering also may play a role. For instance, some people believe that "good patients" don't complain, or that pain is inevitable.



Individuals should remember that pain should not be brushed aside or ignored. Here are some steps people with pain can follow to overcome barriers to effective pain management:



* Don't suffer in silence: report your pain to your healthcare professional.



* Stay involved in your pain management plan: it may take a few adjustments before you are comfortable with your treatment.



* Educate yourself: you will better understand your pain and what can be done to relieve it.



* Learn how to better communicate with your healthcare professional: this may mean keeping a pain diary to illustrate the details of your pain - where it hurts, pain intensity, and what time of day it is worst.



* Don't settle for inadequate treatment: if your health care provider isn't successfully treating your pain, ask to be referred to a medical professional who can.



One of the resources available to those living with pain is www.partnersagainstpain.com. The site contains a wide array of information on various pain conditions, resources such as pain assessment and measurement tools, and links to pain education and advocacy groups.



Partners Against Pain is a national education program provided by Purdue Pharma L.P.

Knowing I'm not the only one suffering with the pain of CRPS/RSD is like a doubled edged sword for me.

From the desk of Carol


Across America, there is an estimated 76 million Americans suffering with some type of pain!

76 Million Americans - Just think, if we all could/would join together, and help to bring awareness to this cause.

*Think about it-What can YOU do?

Knowing I'm not the only one suffering with the pain of CRPS/RSD is like a doubled edged sword for me.

What I mean is, I take great comfort in knowing that I'm not the only one with CRPS/RSD knowing that I can pick up the phone or send an email to others dealing with the same pain I do, and I know they truly understand when I talk about the burning pain that comes along with CRPS.
What really saddens me, is the same thing, knowing that their are so many of us that live with this pain.


Why do we only hear about those suffering with cancer, HIV/AIDS, Alzheimer disease, etc..., we see it daily in the commercials for TV, the magazines we read, and the radio station we listen too. But why don't we hear more about RSD/CRPS? Were starting to hear more about Fibromyalgia, and we also see the commercials for those with back pain, and some different types of arthritis.

From the web page For Grace

We read that there's an estimated 1.5 and 6 million Americans suffering with RSD/CRPS. This may not seem like a lot, to some, at first but when you continue to read, it says that it's more than those with breast cancer, HIV/AIDS and multiple sclerosis combined; yet to date RSD remains virtually unheard of.

When I read that, or even when I think about it, I have to ask myself, why and how...and what can be done so that this changes, and changes soon!

I would love to read your thoughts on this, and why you think CRPS/RSD is virtually unheard of?


Just some of my crazy random thoughts!

Carol Rains






This website is for information purpose only.
Technorati Tags: RSD/CRPS; Chronic Pain

Pain Medication....

I've been so stressed about my appeal with WA states workmans comp, that I've not taken time to put any new articles together. I've got several started, they just need some fine tuning!

This morning I read a wonderful article written by Will Smith from the American Pain Foundation

In addition to this article Will Smith has written several other articles that you might find interesting.

Go to the link below to read more.

What Do You Do if You are Forced to Come Off of Your Opioid Pain Medication Without Medical Guidance

by Will Rowe
Wednesday, May 21, 2008

Opioid medications have a natural property that causes physical dependence. Other medications used to treat high blood pressure, depression, and inflammation can do the same. Common substances, like caffeine, have that property. Because our bodies adapt, it is normal for these chemicals to become "known to us" over the time of exposure. When abruptly or too rapidly taken away, our bodies revolt. That experience can range from uncomfortable to life-threatening, particularly if we have other medical problems such as diabetes or heart disease. Feelings of withdrawal have been reported in varying degrees by signs such as an increase in sweating, rapid heart rate, nausea, diarrhea, goosebumps, headaches, inability to sleep and agitation.

At times, the pain provider may decide that it is advisable in the treatment plan to discontinue opioid therapy. It may be for one of the following reasons:

• intolerable or uncontrolled side effects
• serious non-adherence to the treatment plan or unsafe patient or family behaviors
• lack of improvement in pain and function
• a desire on the part of the patient to discontinue therapy.

Discontinuation of opioid therapy should be done gradually and under medical supervision. It is not standard of care or ethically sound to permit opioid tapering to be left to the responsibility of the patient without guidance or supervision. After watching what occurred in the aftermath of Hurricane Katrina, many in the pain field are concerned that unintentional abandonment and unsupervised withdrawal from at risk medications like opioids should be discussed as part as emergency preparedness planning in all states. Action should be taken to prevent this situation from repeating itself. Therefore, it is not acceptable for individuals to be facing withdrawal alone due to medical abandonment or sudden changes in medical providers.

If you find yourself without a provider and are given no options but to wean yourself from your opioids, the American Pain Foundation recommends that you:

• Notify other healthcare providers who care for you and seek their guidance
• Go to your local emergency department if you begin to experience withdrawal symptoms listed above; report why you are in this situation
• Report your situation to the State Medical Board and Hospital Administrator where your provider has admitting privileges.

As soon as I can I will get back...
http://www.healthcentral.com/chronic-pain/c/3025/28510/medication

SPRING CLEANING TIPS 4 CHRONIC PAIN

Well I keep thinking spring is here, or right around the corner, the weather all across the U.S. has been so crazy this year. Here in Yakima, WA last weekend it was 80 and sunny, this weekend they say we may have snow and rain mix by the weekend!

Well, we all know despite the crazy weather, spring will be here soon!

Which reminds me of the days as a kid when mom would get out the much dreaded “Spring Cleaning Checklist” did you grow up like this?

For those that deal with Chronic Pain, 2 do the dreaded “Spring Cleaning” can be overwhelming to most of us. Most of us do good just 2 get out of bed daily. So I thought I would list some things I do that have made it easier 4 me 2 stay on top of my house work. I would love 2 see tips with what you all do 2 make your daily life easier 4 you.

The first thing I start with always is “The List”!

For me I like drawing a line through the completed project!

After I make my list, I decide whats most important, and what can wait till later in the day-week-month-year! What gets done on the list also depends on how I’m feeling that day-moment etc... So of course if I’m having a rough morning-day I rest. There are some things I try 2 do despite my pain. The 1 thing I try 2 do daily is make my bed, some days that’s all I get done, and I’ve learned that’s ok! The other areas I try 2 get 2 daily are the bathrooms and the kitchen-4 the obvious reasons! With just my husband and myself at home now, this is pretty simple and John is great about seeing what should be done and doing it! Thanks sweetie!!

Ok now we got the List, and we’ve Prioritized it, now set a timer if you have 1, also learn 2 listen 2 your body, be-4 you get exhausted stop, and rest, 4 me I work 5-10 minutes at a time, and rest about the same amount of time, or longer if needed. So set limits, that work 4 you.

When cleaning in 1 room, have a basket or a bag that you can put things in that do not belong in that room. As you take this bag with you through out the day, you put these items away. If you have children-teenagers living at home, my dad did this, he had his bag and if he found anything laying around the house that did not go there-it went into the bag. When whoever had laid the item down-realized it was gone, he/she knew 2 check with dad and his bag of stuff. In order 2 get the item back you had 2 do an extra chore around the house! I hated it then, but have 2 say it does teach you to put things were they go!

Another idea I have, you know those yard carts that you can pull like a wagon-or sit on it to plant and weed. I have 1 of these I use outside, it has a nice storage area and a little tray that comes out I can sit on it and use my feet 2 get around, I can lift the lid which is then like a wagon handle and I can push or pull things around. I bet this could be used in the house, 4 any 1 that has problems getting around their home, they could either make sure each room had the right cleaning materials in them, or keep them inside this yard cart.

This is like the one I have, and I love it for outside!

(http://www.walmart.com/catalog/product.do?product_id=1659370)

If any 1 has or does try this in the house, let us know how it works!

So back to cleaning, (I know, you were hoping 4 the RSD fog to settle in!) when your doing your daily or spring cleaning, take your time, its not a race!

In our home we have carpet and linoleum. So once a week I/John will sweep all the floors. Once a week I/John will vacuum, and once a week I/John will use the Swifer Wet Jet. I LOVE my SWIFER! These chores are difficult for me 2 do, so I sweep 1 day, vacuum, 1 day, mop 1 day. Unless John or one of the kids do them for me.

Keeping cleaners in the rooms their used in saves time. If you have small children ever in your home, PLEASE be sure 2 keep all cleaners-medications-etc…out of reach or lock & key!

Another tip 2 save you time, is 2 eliminate your cute little nick-nacks on tables shelf’s through out your home. This makes dusting a breeze! I have a fairly large collection of Snoopy items through out every room in our home. So thankfully John and or our kids (Sharon, David, Brandon) help with some dusting, even though the kids no longer live at home.

So I’ve mentioned here a few times about my family helping with my home chores, even though our children are grown and have life’s they stop in 2 help when they can, or as I need it. It was and at times is still difficult 4 me 2 ask 4 help. I’ve always been very active, and took pride in being able 2 do most anything any man could do! But over time I’ve learned there’s nothing wrong with asking 4 help! So ask 4 help when you need it! Its really ok! And think of the blessings-good karma those that help you, can receive 4 the service they provide to you!

If you have children give them some chores 2 do, they can help vacuum, dust, empty garbage’s, make beds, fold laundry and put it away. They may not do it your way, and that may be difficult 4 anyone that has "control issues" This was and still is very difficult area 4 me.

So 2 kind of round this up,

1. Make a list

2. Prioritize your list

3. How are you feeling?

4. Set your limits, 5 min. 7 min. 10 min. stop and rest…repeat till project is done (or you don’t care if it ever gets done!)

5. Ask 4 help, its ok!

6. Recycle-Reuse-Reduce

7. Use Green cleaners when you can

And speaking of setting limits!

All my best,

Carol

Finally, My L&I Court Hearing

Well, we had my hearing last week. It went well I think. It was extremely emotional for my daughter and myself.

My lay witness were asked questions about my volunteer work with Cub Scouts, a program that I love, and support. In 2006 our local newspaper did a story on me and RSD. I was shown in my Cub Scout Leader uniform at our packs pinewood derby. So Washington State's workman's comp hired a private investigator, (a spy) he was hired to film me at our districts day camp that year. (2006)
I was the day camp director that year. This was a 3 day event. This spy, only recorded 17 minutes of video divided over the 3 days.
For 3 min. of the video I'm folding t shirts with my sister who was also our medical staff for the day. Then for another 3 min. or so I'm talking 2 others and holding a clip board, taking notes and getting ready 2 welcome the campers. Then I'm seen washing out water jugs and moving 1 of them about 5 feet, I can not remember if it had water in it or not. Then I'm seen with a jr. staff member getting out of a John Deere Gator, and we lifted a ice chest with 50 ponds of ice, off the back of the Gator-and sat it right down on the ground. The last 9 min. I'm seen with my husband sitting in the John Deere Gator, watching the closing ceremonies on the last day. I explained to the Judge what ways going on each day and what the spy did not show. He did not show the 34 foot RV we borrowed so I could go and lay down when I needed, which was about every 2 hours.
He did not show the 2 golf carts that were borrowed giving us a total of 3 vehicle's I could use 2 get any where I needed with out walking any great distance. Nor could he show the medications I was taking all day to help control the pain, nor could he show the 2 spinal cord stimulator's that I have and were working those days 2 also help control my pain.

My husband John, and our daughter Sharon, both testified on a personal level-how the pain not only affects them but our grandchildren as well.

There are still a few more doctors that are scheduled 2 testify on my behalf. I think the last 1 is scheduled for April 30th 2008. I'm not really sure how long the Judge has to go over all of the evidence and make his decision. I'm so hoping and praying that he once again HEARS the truth and finds in my favor.

Laters,

Carol