Arthritis Research and Prevention Act Included In Economic Stimulus Package

Warning: Use of undefined constant user_level - assumed 'user_level' (this will throw an Error in a future version of PHP) in /home/arthr2/public_html/wp-content/plugins/ultimate_ga.php on line 524

News flash from arthritis.org:

Today, President Obama will sign the American Recovery and Reinvestment Act (H.R. 1), a $787 billion economic stimulus bill as passed by Congress late last week.  The stimulus bill includes $650 million for a Prevention and Wellness Fund that will provide for evidence-based clinical and community-based prevention programs (mainly funded through the CDC) and $10 billion for research at the National Institutes of Health (approximately $140 million for the National Institute of Arthritis, Musculoskeletal and Skin Diseases).

Thanks to your advocacy efforts and that of the Arthritis Foundation, research and public health provisions with the aim to target more resources to arthritis research and prevention have been included in the final bill.  The details of the legislation, as well as the rules and regulations governing the specifics still need to be determined.  However, the bill calls for investing in evidence-backed, community-based disease prevention programs and includes accountability measures to ensure the funding is being used to directly improve the health of Americans.

The Arthritis Foundation will be advocating to the new Obama Administration that 1) Arthritis research needs to benefit from this stimulus funding and 2)  Arthritis Foundation programs are evidence and community based prevention programs that need to be supported throughout the nation. Stay tuned as more details of this massive legislation emerge!
Woo hoo!!

Chronic Pain Is Highlighted On TV’s “House”

Warning: Use of undefined constant user_level - assumed 'user_level' (this will throw an Error in a future version of PHP) in /home/arthr2/public_html/wp-content/plugins/ultimate_ga.php on line 524

Episode Title: Painless (Season 5, Episode 512)
Writers: Thomas Moran & Eli Attie
Original Air Date: 1-19-09
Summary from the FOX.com website: House (Hugh Laurie) and the team take on the case of a man living with such severe chronic pain that he tries to kill himself.

While the story of this episode begins fairly bleak, I know some people will find the content to be very realistic, which is exactly why I’m blogging about it. Personally, I am thankful that a television show has given chronic pain some cred. Chronic pain is certainly not your typical TV “disease of the week,” yet it deserves to receive some attention because it is largely misunderstood.

I’m not a regular viewer of House, but I do know that House himself suffers from chronic pain, which is part of what drives him to look at every possible angle in order to properly diagnose the chronic pain patient. Like a lot of us arthritis warriors, our disease can sometimes be difficult to identify. I know people who have been in pain for years, yet have gone that entire time without a true diagnosis.

We all know, all to well, that time spent in pain (diagnosed or not) is emotionally and physically taxing, as it is shown in this episode. Two quotes from “Painless” that perfectly illustrate that point: Patient: “I pray for strength more than hope.” (Wow, I can relate to that quote on a lot of levels.) House: “He’s [the patient] not in pain because he’s depressed. He’s depressed because he’s in pain.”

Another quote that really struck me from the episode is this one:

“You’re alone, that’s why you can handle your pain,” the patient explains to House. “No need to put up a front to be what anyone else wants you to be.”

This line makes me think that one of the writers responsible for this episode had some personal experience with chronic pain because it is dead on. On days that I don’t feel so great, but have to go to work, I’m definitely putting up that front. It’s become so automatic that I don’t realize it until I come home exhausted. Sometimes putting up that front is a necessary part of coping, I would get tired of hearing myself complain if I grumbled each time that I was experiencing pain. Plus, I think complaining on a regular basis would make my pain more difficult to manage. Anyone else agree with me?

I recommend giving this episode a look, so I embedded it in the post. Watch it with a friend or loved one and use it as a jumping off point for a discussion about your chronic pain. You can also check it out on Fox.com or Hulu.com.

If you have seen other shows deal with this subject, or arthritis, please let us know in the comments. I’d love to check them out, too.

I’ll leave you with this quote:
“Gotta let the phone ring more than four times when you are calling a cripple.” -House

Arthritis Patient Seeking Dr. Right

Warning: Use of undefined constant user_level - assumed 'user_level' (this will throw an Error in a future version of PHP) in /home/arthr2/public_html/wp-content/plugins/ultimate_ga.php on line 524

Happy Valentine’s Day, arthritis friends!

“Doctors” is a popular topic at my young adult support group meetings. I’m lucky that the two rheumatologists I’ve seen for my arthritis have both been excellent. But, more often than not, people I know tend to complain about their doctors.

For those that are not so lucky to have a great rheumy, it might be worth your while to check out RateMDs.com. You can browse doctors by city and specialty, and you can also look up specific doctors. I wouldn’t use this tool as your only source of information about a potential doc, but I think it could be a helpful resource, especially for someone who has just been diagnosed.

Say you get a doctor recommendation for a rheumatologist and he/she has mostly negative reviews on RateMDs.com, you might want to seek out another recommendation or do some further homework before making an appointment. Of course everyone’s perception and experience is different, so keep that in mind when doc hunting.

If you are curious like me, you can use look up your current doc to see what other people are saying about him/her. I plan on adding positive reviews for the two rheumatologists that I’ve seen, and a negative review for my ex-GP who once looked up my symptom (altered sense of taste) on the Internet. Um, I could have done that for free at home in my pajamas.

Three Simple Ways to Find a Rheumatologist

  • Obtain a referral from a doctor you trust and like.
  • Call your local chapter of the Arthritis Foundation and ask for a doctor recommendation.
  • Find a support group for the type of arthritis that you have and ask people in the group for doctors that they’ve had a good experience with.

Just like you wouldn’t settle in a romantic relationship, don’t stay with a doctor you don’t like. If you feel that you don’t get good care from your doc, don’t give up. Search for a new one, even if it takes seeing a few bad doctors to get to a good one. Stick with it, your health is worth the trouble.

This Valentine’s Day, give your doctor some love, or find a doctor you may start a beautiful relationship with.

RateMDs.com

Educational Seminar On Sleep for Rheumatoid Arthritis Patients

Warning: Use of undefined constant user_level - assumed 'user_level' (this will throw an Error in a future version of PHP) in /home/arthr2/public_html/wp-content/plugins/ultimate_ga.php on line 524

I don’t know about you, but if I don’t get a good night’s sleep, I am worthless the next day. Sometimes the pain from my arthritis prevents me from getting a quality night’s sleep, other times, I prevent myself from getting a good night’s rest by simply staying up too late.  So, I was excited to learn that a great site called CreakyJoints (from their website: a community for people of all ages with arthritis) will be hosting a free patient education seminar about getting a good night’s sleep on Thursday, February 12 from 7-8:15 p.m. ET. Participants have two options for joining.

Register to participate by clicking here. For more information about the event, click here.

If any of you out there have your own tips about resting well at night, please feel free to share them in the comments.

Vote For ArthritisFriend.com In Wellsphere’s Health Blogger Awards

Warning: Use of undefined constant user_level - assumed 'user_level' (this will throw an Error in a future version of PHP) in /home/arthr2/public_html/wp-content/plugins/ultimate_ga.php on line 524
Help Sheryl Win PHBA!

Click Here To Vote!

Hi Friends,
I am writing to ask you to please take some time between now and the end of the day (January 31st) to vote for me in Wellsphere.com’s Health Blogger Awards. I don’t expect to win, but I would love to make it into the top 100 list that they will be publishing. This will help me work towards my goal of reaching as many people as possible with arthritis and offering you a place to vent, while also providing you with gathering tools for coping.

If you are not a member of Wellsphere, they will ask you to register on their site in order to vote. It is a bit of a hassle, but it shouldn’t take more than a few minutes. And the time you take to vote for me will be much appreciated. 🙂 Thank you to all who take the time to vote for this site. And thank you to all who have become loyal readers and inspired me to keep searching for interesting stories to blog about.

Click here to vote now!

Stay tuned for some great upcoming posts:

  • Do You SureClick? Should I SureClick?
  • Rum, Religion and Arthritis

2009 Arthritis Walk: Let’s Move Together

Warning: Use of undefined constant user_level - assumed 'user_level' (this will throw an Error in a future version of PHP) in /home/arthr2/public_html/wp-content/plugins/ultimate_ga.php on line 524
Arthritis Walk Shoes

Grab your sneakers! It's time to sign up for the Arthritis Walk.

I love the arthritis walks for two simple reasons. The walks raise money for the Arthritis Foundation and awareness for arthritis-related diseases — two very important things.

It’s time to start building teams and raising money for your city’s arthritis walk! Start early and stay dedicated to your cause. Your local Arthritis Foundation branch will appreciate your efforts!

Local Plug: If you live in Los Angeles, like me, there is a good possibility that you could hit two walks. There will be one on May 3 at Magic Mountain and one on June 7 in Santa Monica Beach. If you live in LA, join our Facebook Group for the Magic Mountain walk in Valencia, CA. Start a team and we’ll see you at the theme park on May 3!

So … what are you waiting for. Here’s your chance to get involved and make an impact!

Three Easy Steps to Get Started

  1. Find a walk in your area by going to letsmovetogether.org.
  2. Start a team and invite your friends to join you.
  3. Raise money.

Over the course of the next few months, I’ll be offering fundraising tips and ideas, so check back often. If you have tips of your own to offer, leave them in the comments or email me.

Shameless Plug: Buy one of our fun, ArthritisFriend.com tees and wear it proudly at your local walk!

Let’s get moving!

Great News! Arthritis Act to be Introduced Again

Warning: Use of undefined constant user_level - assumed 'user_level' (this will throw an Error in a future version of PHP) in /home/arthr2/public_html/wp-content/plugins/ultimate_ga.php on line 524

American FlagUpdate from Arthritis.org:

The 111th Congress began on January 6, 2009, and all legislation not signed into law before that date must be introduced again.  The Arthritis Foundation is very pleased to announce that Representatives Anna Eshoo of California and Fred Upton of Michigan plan to introduce the Arthritis Prevention, Control and Cure Act in the coming weeks.  They will introduce the same legislation that unanimously passed the House of Representatives in September 2008.  Since it is a new Congress, there will be a new bill number once it is introduced. 

Before it is even introduced on the House floor, YOUR Representative has an opportunity to indicate their support of this critical legislation by joining Reps. Eshoo and Upton as an original cosponsor.  Please contact your House of Representative member and ask him/her to be an original cosponsor of the Arthritis Prevention, Control and Cure Act of 2009.

Find out how you can take action, by clicking here.

The Mental and Physical Frustrations of Arthritis

Warning: Use of undefined constant user_level - assumed 'user_level' (this will throw an Error in a future version of PHP) in /home/arthr2/public_html/wp-content/plugins/ultimate_ga.php on line 524

Jason Crigler AlbumDuring the holidays, I read about musician named Jason Crigler who suffered a brain hemorrhage that left him temporarily unable to speak or walk. He also had to teach himself how to play guitar again.

Don’t worry, I’m definitely not trying to compare arthritis to a brain hemorrhage, but there is something about this quote from Crigler that I think rings true for a lot of us arthritis warriors.

“I knew what to do; I just couldn’t physically do it,” he says. “It was painful, because my hands were so tensed up, like claws almost. I’m still working to get that open all the way. But I knew mentally what to do, and I could hear what to do. Physically doing it was the issue.”

Nothing is more frustrating than trying to do something as simple as say, open a can of soup, only to discover that either you simply can’t do it, or you can do it, but with great difficulty. If you haven’t had arthritis all your life, you can remember when opening a can of soup was not hard. But now it is, along with a lot of other things. We adapt and we get through it, but it still sucks. For me, the momentary frustration of not being able to do something that I believe I should be able to do with ease, does not go away. It’s always there. Sometimes I get teary. Sometimes I’m angry. Sometimes I just roll my eyes, as if to say to my arthritis, “I know what you are up to, but can you cut me some slack today?”

But I keep moving forward, and I remind myself that there are good days and bad days. Here’s to a year where we all strive to “keep moving forward.”

Read More on Jason Crigler [via NPR.com]

There was a documentary made about about Crigler’s miraculous recovery, which looks to be very inspiring. Check it out here.

9 Arthritis-Friendly Things I’d Like to See in 2009

Warning: Use of undefined constant user_level - assumed 'user_level' (this will throw an Error in a future version of PHP) in /home/arthr2/public_html/wp-content/plugins/ultimate_ga.php on line 524

I think we’d all like the world to become a more arthritis-friendly place. To that end, I came up with a list of nine things that could set that idea in motion this year.

  1. Our own reserved parking spot in front of our Rheumatologist’s office.
  2. Prizes hidden in prescription pill bottles. If Cracker Jack could do it with popcorn, why can’t Pfizer do it with Celebrex?
  3. Seats on rides at theme parks should have more cushion. Most notably, the Matterhorn at Disneyland.
  4. A rewards program for Enbrel patients. Buy 11 months of Enbrel, get one month free. After all, at $350(ish) a month on COBRA, the makers of Enbrel are doing better than most drug lords in Columbia.
  5. To be able to earn points for each prescription ordered through the local pharmacy — points that could be used to purchase an Amgen beach towel or an Arthritis Foundation wind breaker.
  6. I’d like better food at the Dining Hall at Camp Esperanza , a camp in Big Bear, CA for kids who have arthritis. Plus, I’d like to witness better pranks. Shaving cream is so five years ago and I know the kids can be cleverer.
  7. I know all women agree with this, but especially those of you with arthritis — I want more women’s shoes that look cute, are uber-comfy and not frumpy.
  8. Don’t you hate it when people give us dirty looks after we park in a handicap space with our placards? I want a special badge that says: “I have arthritis, you bastard, so piss off!”
  9. On more serious note, I’d like to see more arthritis awareness raised and hear fewer people saying, “But you don’t look sick.”

Okay, now it is your turn. Add your wish list via the comments!

Here’s to a happy and healthy new year for all!

Be well,

Sheryl

A Rant On Seizing Opportunities To Raise Arthritis Awareness

Warning: Use of undefined constant user_level - assumed 'user_level' (this will throw an Error in a future version of PHP) in /home/arthr2/public_html/wp-content/plugins/ultimate_ga.php on line 524

I wimped out. Here I thought I was finally feeling comfortable enough in my arthritis skin that I could discuss it with almost anybody, but when I stared straight into the face of a perfect opportunity to "share my story." I totally wimped out.

Note: It’s been a few weeks since this incident and since I began writing this post, and I have mellowed out and am not "beating myself up" so much for my perceived failure.

Here are the details of that day a few weeks ago: I was at lunch with three coworkers. One is aware that I have arthritis, but doesn’t really know the particulars beyond that. The four of us began discussing allergy shots, which led to a quick rant on how giving yourself or someone else a shot is icky and inconceivable. I agreed that it is icky, but I also wanted to share with them that when someone is given the option to feel better and it involves giving themselves a shot, you’d be surprised how quickly the squeamish muster the strength to pull the trigger and release the hounds. I am the poster child for this.

I talked myself out of sharing with them that I have arthritis about 10 times in a matter of a minute. I think the reason for this partially hinged on my mental state that day. I wasn’t feeling particularly confident. I was  also worried about their reaction to this information — would they ultimately understand why I was sharing this information with them? Maybe they would wonder why someone who looks physically normal would have to give themselves a shot twice a week? I hate feeling misunderstood. Would they feel sorry for me? I don’t want them to. Arthritis is just part of who I am.

< Loud sigh > Sharing your story and information about your disease is always complicated.

Determining the appropriate amount of information to divulge is a challenge.  Once you decide to open up about arthritis, then you have to decide how much to tell. I personally don’t want to overwhelm people with information about a disease they really can’t see. Often, no matter how much information we offer, people just don’t "get it" the way we wish they did.

Despite that, I believe there are a number of good reasons to make my battle with arthritis public knowledge. It allows people to get to know me better. It propels me to continually strive towards full acceptance of my disease. Discussing my chronic condition will raise awareness about this disease, especially the fact that it affects young adults and children. Maybe that awareness will eventually translate into research dollars or more compassion towards arthritis patients.

We know that when most people think of arthritis, they think of older people with crooked fingers. They don’t know about the fatigue or the chronic pain or all the maintenance medications that I happily consume even though one of them might saddle me with lymphoma some day.

For a long time, only a few of my close friends and some family members knew that I had arthritis. Back when I was diagnosed with arthritis I was a very private person. I wanted to control very carefully what people knew about me. On top of that, I had no idea what this disease meant to me personally.

As I write this post, I realize that I have a lot to be proud of. I am finding my niche in the world as a person living with arthritis. And the bottom line is that I am the most comfortable and confident as I have ever been as a young woman with Rheumatoid Arthritis. It will always  be a struggle to determine who to let in to my arthritis world and how much to tell them. The fact is, no one is truly going to understand the way we wish they would unless they are going through it themselves. In order to cope we need to be connected to people who understand life with a chronic disease. Arthritis warriors "get it" and that’s why we must stick together.

Thanks to all of my arthritis friends out there for their support and insight! You guys are the best.