Today I feel like

Image by janusz l via Flickr

Not feeling so good today, so just hanging out in bed, and watching FOX NEWS...

Also try to get to a long list of emails, and updates... I hope you have a chance to read the story I posted earlier. Here is a quote from one of the young ladies
"Different things work for different people," Jill said. "Be open to the possibilities." I know for myself as an adult dealing with the daily pains of CRPS/RSD daily is trying at best for me! these young ladies show that friends, and team work go along way!

Wishing you all pain free days & nights

Carol

"Different things work for different people,

Two girls lean on each other for support against a rare disease By Ryan Stotts La Crosse Tribune LA CRESCENT, Minn. - Sarah Kratt lives with pain every day. "A lot of people don't get it because I'm always smiling and happy," she said. The 14-year-old, who lives with her family on 20 acres outside La Crescent, was diagnosed in May 2007 with the rare and mysterious complex regional pain syndrome - a chronic pain condition resulting from a dysfunction in the central nervous system. A chance meeting with April Tillinghast, 15, of Kingwood, Texas, who also has CRPS, sparked a friendship that has helped Sarah handle the pain in her left leg and back. Sarah's leg began to hurt in April 2007, said mom, Jill Colbert. It got bad enough that Sarah couldn't walk and her leg would turn purple. Doctors were perplexed. Despite physical therapy and pain medications, Sarah's condition worsened. First she was on crutches, then a walker, then a wheelchair. Finally, she was bed ridden. "It's so hard to see your child go through something like this," Jill said. "You feel so helpless." Sarah saw more than 20 doctors, but as time wore on, nothing worked. "Sometimes I wish I could've given the doctors my pain, so they would know what it's like," she said. In December 2008, a ray of hope entered their lives in the form of kinesiologist Dr. Alan Trites, who has an office in La Crescent. "He said Sarah was like an onion," Jill said, "peeling back each layer and working through her body's issues, slowly getting her body back to where it would work with her again." Then, in June 2008, while at a month-long pain rehabilitation program at Mayo Clinic, Sarah met April. The connection was almost instant. "She's really a positive personality," April said, "but there's also this really deep understanding of each other." April's pain was in her right foot, with secondary pain in her head. She had been living with CRPS since 2006. The girls remained close and continued to communicate via Skype, the online video and phone service, as well as by text messages and e-mails. "It took that friendship with April to understand and to help Sarah get through all this," said Sarah's stepdad, Tom Colbert. As the girls became closer, so did Jill and April's mom, Susan Tillinghast. "I lived in my own shell, taking care of Sarah, finding different things to do," Jill said. "So it was interesting meeting other parents going through the same thing. You have a connection there. It feels so good." In July, Sarah spent two weeks in Kingwood. April also came to La Crescent for a week. "It's easier to deal with everything when I'm with her," Sarah said. "If I hadn't met her I don't know where I'd be right now." Susan, who spoke on the phone from Kingwood, said the girls have formed a healthy bond. "The greatest thing is the happiness they seem to share," Susan said. Both girls are grateful for simple things and want a normal life. "I hope I can do something good with this and help somebody else," April said. While April would like to volunteer at places like headache clinics, Sarah can see herself becoming a nurse. "The doctors would breeze in and breeze out, but the nurses were the ones who would take care of you and comfort you," Sarah said. There isn't a cure for CRPS, Jill said, but she wants people who might be suffering from pain to know there is hope. "Different things work for different people," Jill said. "Be open to the possibilities." http://www.rsds.org/5/news/2009/August/LaCrosseTribune_5_193.html This E-alert was made possible by the contribution of the members of the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA). To learn more about becoming a member of RSDSA, please click here.

I feel like an old beat up rug,

I used to love it when the temperature outside was over a 100

The hotter the better was my thinking! Now anything over 75 is treading on dangerous grounds for me, and with the heat we've had in the Pacific Northwest this week with the temperatures in the 100's.
The stress and depression I've been under lately has not helped.
Our son Brandon, his girlfriend and their 1 year old son are living with us. Brandon just today after almost a year of unemployment, starts a full time job tonight! All I can say is, its about time, now I hope he can keep it together and find a house for him and his family.
I love having Colton (my 1 year old grandson) here, but there are days when I feel more like his mom than his grandma.
I try may be a little to hard to be understanding and fair, most of the time feel like an old beat up rug that one day will be tossed aside. In addition to supporting our son and his family this last year, we lost our home.
Were currently living in a home that was I kind of loaned to us for a few weeks, (Until Aug. 10, 2009) looking for some place to move with little to no money is not an easy task. Johns looking for full time work, but in this economy he's finding little success.
I know this is some random crazy thoughts, just stuff that is coming out as I try to type with one hand, as my CRPS/RSD in my left arm is really flaring up,


my arm is really hurting, so this is the end of today's post. I will try to post more daily items-much like a journal in hope of sharing more of what my life with this never ending pain is like, and how my family and I deal with this daily.

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