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






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Technorati Tags: RSD/CRPS; Chronic Pain

THE Blues

MORE THAN MONDAY MORNING BLUES-

Feelings of being alone-fearful-angry-feelings of worthlessness- hopelessness-restlessness, irritability, or feeling on edge-feelings of overwhelming anxiety and fear.

Over the last 5 or 6 months, I've been battling the worst depression I've ever had. Only now have I really decided to share this.

Some of this I feel is related to the spy that WA state's workman's Comp. hired to watch me in June of 2005 for three days. The video caught me having a little fun, as a Day Camp Director for about 200 Cub Scouts! This was the last year I was doing this, it was announced daily that a new camp director would be needed for next years camp. The video is only 22 minutes long, with 17 minutes of me. The spy, paused or would stop the video every time I would sit down, or would go to the RV to lay down.

Over the last several months, making a phone call, reading or writing emails, getting out of bed was ALL so difficulty. Sitting and staring out the window consumed my days, I'm not even sure what I was staring at.

I tried to get to some of the every day chores, laundry, dishes, emails, phone calls, but I have to admit that did not always happen.

For me one of the worst things about depression, is knowing your depressed-knowing what to do to help yourself, but, and its a BIG BUT-Not to be confused with a BIG BUTT! I just could not do it, its just to much effort...

There are so many things that got left undone when this hit me. Which only added to the depression and the guilt.
So how do I go to all of these people that were counting on me, and tell them what? I'm sorry I did not get to you, I let you down- I was depressed?

There are a lot of people out there, who just do not understand depression, and living with depression. For me I do not like telling others I'm depressed-because of the fear of what they may think.

Only now, am I finally seeing flickers of light at the end of this lonely trail.


Whats your thoughts?
What do you do when your depressed?
Do you suffer with depression all of the time?
Do you tell others when your depressed?






Carol Rains

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

Top Ten Tips: The Road to Pain Relief

Top Ten Tips: The Road to Pain Relief

It’s important to become your own best advocate as you navigate the road to pain relief and reclaim your life. And the earlier you seek treatment, the better. Here are some other helpful things to keep in mind along the way:

1. Don’t be afraid to speak up! Only you know the extent of your pain and how it affects your quality of life.
   
2. Knowledge is power. There are a variety of drug and non-drug therapies (e.g., physical therapy, yoga, meditation) available to effectively control pain; these are typically used in combination. Ask your healthcare provider about ways to relax and cope with pain. Your
   pain may feel worse if you are stressed, depressed or anxious.
   
3. Set realistic goals with your healthcare provider for things you most want to do, such as sleeping, working, exercising or enjoying sexual relations. Begin with the easiest goals first.
   
4. Tell your provider what over-the-counter medications, vitamins and supplements you take, at what dose and how often. Also let him or her know about other personal health habits (e.g., smoking tobacco, alcohol use), which can interfere with some pain treatments and increase pain levels.
   
5. Keep a pain journal to record the frequency and intensity of your pain. Use descriptive words, such as sharp, crushing, throbbing, shooting or tender. Also, take note of how well your treatment plan is working and what makes your pain worse or better.
   
6. Write down questions you have before each appointment, and tell your provider(s) if there is
   something you don’t understand.
   
7. Bring a relative or friend to your appointments for support and to help take notes and remember what was said.
   
8. Find out about support groups and educational programs in your area or online.
   
9. Reach out to supportive friends and family members when you need them.
   
10. Know there will be good days and bad days.

Reprinted from APF's Pain Resource Guide: Getting the Help You Need
http://www.painfoundation.org/Publications/PainResourceGuide2007.pdf

2 Day is a New Day-

9:00 am Tuesday, April 8th, 2008

Having a lot of pain the last week or so, and 2 top it off dealing with a tooth ache.
I see the dentist this Thursday, should be so fun, going 2 the dentist is I think 1 of the necessary evils of life!

The burning & crushing pain have been so intense, even with my stims and my medications, the pain seems 2 be stuck in high gear.

Still waiting 4 my L&I court of appeal 2 finish up. The last witness we've called is Dr. Baumeister of Edmond's WA, he will testify on the 30th of April.

I had a good day last week! I went to town had my hair done, then went 2 Bi-mart and bought a few spring flowers-Pansies, dark pink Rock Cress, and 1 with some cute little pink trailing flowers, and 1 with some cute little yellow trailing flowers. Not sure what they are! I planted them with a pinkish Prim Rose.

John's been working a lot of late hours delivering 2 some of the orchard's in the area. I talked to my son in CO yesterday, they still have snow and were getting more! He lives near Steamboat Springs.

I have a friend in New Mexico who also has RSD. She's really having a difficult time with the pain.
She is asking for ANY ways that those of us with RSD use to help endure the pain-
So ALL of you with RSD, what do you do to help deal with the daily pain of RSD?
I'm sure she is not the only one needing these answers. There are so many people that are suffering in daily pain-they do not have doctors that know how to properly treat pain, and so these people all suffer. As of now I think I'm 1 of the few that has not only 1 Spinal Cord Stimulator but 2 of them. In addition 2 the stims I also take pain medications for the pain.

Here is what I do to reduce my pain...

• Rest
• Hot/warm bath with epsom salts
• I turn off the TV, radio, CD's, Ipods etc..
• Turn off the lights-close blinds
• Sit outside on a nice day
• Talk 2 a friend
• meditate
• I have a "special place" I go 2 in my mind. I've used this 4-so many years during stressful times. My place is a Cabin in the woods, a creek is near by. I've seen dear, squirrels, chipmunks, all sorts of birds, and wild flowers. At my place there is NO PAIN, NO STRESS. I've split wood there, sat in my rocking chair on the porch. Fished in the creek, and even sat inside during a mountain thunder storm! Its up 2 you 2 make your place, and its location! Another nice thing about my place, there is no lay overs, crowded airports-lines, and no worries about gas prices in order 2 get there!
  
• I surf on the net-read articles, and stories on chronic pain-gardening-cub scouting-Ebay-Snoopy-
  
• I pray-cry-scream-and repeat as needed
  
• help some 1else
• I doodle-draw landscape ideas for my yard-
• look at my gardening books, magazines,
  
• pace
• make a list of everything I'm thankful 4

Thats all 4 now.


Please post your ideas here, or email me at carol@thereishope4chronicpain.org

APRIL FOOLS DAY!!!

So how was every 1's April Fools Day?

Did you pull a prank or did you have a prank pulled on you??

My favorite prank I ever did with the help of John, happened several years ago. His name is Mike, so on March 31st 1984 or there about he stayed at our place. The next morning John & I were up at 6 am with Sharon & David.
(our older 2 children around the ages of 4 & 3)
Around 6:05 am I set all the clocks ahead 3 hours, so now its 9 am...
Mike was still sleeping-had no car-had 2 be at work at 10 am, our house was about 11 blocks from where he worked. John, went 2 wake him, he went 2 the front room where Mike had laid down and crashed, around 2 am! He shook him and said hey Mike don't you work 2 day? Mike replied with yes, but not till 10 am. John said, MIKE its already 9 am, man you better get moving!
Mike jumped up- ran 2 the bathroom, ran back out grabbed a cup of coffee-and left 4 work!!

We later got a phone call, from guess who? yep, it was Mike, he took it very well, and promised 2 get me back someday!!!! (FYI 2 this day, Mike has never been able 2 prank me!)

All my best,

Carol

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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

Had my L&I hearing today (March 18th)

Had my L&I hearing today (March 18th)
Got started at 9 am and finished around noon. I was questioned for about 45 min. I think.
Plus we had my witness, all did a great job. This was my 2nd time at the Board of Appeals.
The judge seems very nice, he's also the same judge we had the first time we went before the Board of Appeals in 2004, and we won! I'm hoping he will once again see and feel the truth and award me my pension, or allow my time loss to be re-started.

I am so exhausted from the day-stress-pain.

Will write more about my hearing tomorrow.

Carol

Getting so nervous....

Happy St. Patricks day!






Tomorrow is my L&I court date. I'm so tired of this battle I really hope its done.

Living in Pain is not easy, and I hate it, I really do. I love meeting others and talking and hearing from others all the stories...but there all so full of PAIN...
How I wish we could all meet one day PAIN FREE....





CAROL

Be Patient...Im so new to Blogging, but not PAIN!

Hi

My name is Carol Rains I live in Washington state. My husband and I are finally alone!
Our three children are all out of the nest! Sharon-David-Brandon
We also have 5 grandchildren and 1 more on the way! Peter-Jaydon-Jackie-Paige-Kaiden- ???
John and I also have a Chow Chow-her name is Yoshe, Snoops is are Dashhound, and then theirs Trapper John M.D. Mouse Detective, yes are cat!

My RSD/CRPS started in 1998 after an injury at work. I now have RSD in both legs, my left arm, and now my lower face. I have 2 Spinal Cord Stimulator's that help with 30% of the pain. The rest of my relief comes from some medications, support from family and friends, positive attitude helps, and spring-summer days!

I go to court on Tuesday the 18th of March-my attorney is trying to get WA State to grant me a permanent disability and put me on the pension plan! I was approved for my SSD in 2003, the judge had the records show that I became disabled the same day I was told I had RSD/CRPS and that was Nov. 22nd, 1999, a day I'll never forget....

My husband and I also volunteer with the American Pain Foundation, last fall we were invited to their 10th Anniversary Gala for a speaking engagement. It was a wonderful experience and we met some fantastic supporters of Chronic Pain.

I love Snoopy-being outside, gardening, family & friends, camping, talking to others about chronic pain, and the world wide web,!

Thats all I can do for now, please check back often, let me know how your doing...


Carol Rains