Mark Your Calendars! / Offline for a While

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I’m going to be offline for a bit (more about this below), but in my absence the folks over at Creaky Joints/Joint Decisions team have some great things going on, so be sure and check these out:

Mark your calendar for the following upcoming events: Twitter Chat 1 Wall photo_CJ

  • #JointDecisions Twitter Chat #1 – Next Tuesday, April 19, 6 p.m. ET: “Balancing RA and Your Social Life: How to Strengthen Your Relationships In Person & Online,” moderated by @CreakyJoints and featuring Amanda John (@AllFlaredUp) and Wren Vandever (@RheumaBlog_Wren)
  • Facebook Chat #1 – Tuesday, April 26, 2 p.m. ET: “Raising a Family While Living with RA,” featuring Mariah Leach (From This Point. Forward.)
  • #JointDecisions Twitter Chat #2 – Tuesday, May 10, 6 p.m. ET: “Helping Others Help You: Communicating with Caregivers and Loved Ones”
  • #JointDecisions Twitter Chat #3 – Tuesday, June 14, 6 p.m. ET: “Traveling with RA: How to Stay on Track Packing, Planning & Preparing,” moderated by @CreakyJoints and featuring Eduardo Flores (@RA_Guy) and Dina Neils (@titaniumtri)

To participate in the Twitter chats, remember to use the #JointDecisions hashtag and follow the co-hosts. To join the Facebook chat, visit the Joint Decisions page at the designated time and respond to chat questions by sharing your thoughts in the post’s Comment section.

As far as my being offline, as reported earlier, I leave tomorrow to participate in the 2016 HealtheVoices conference in Chicago where I will be joining some of my BFF’s from the RA blogosphere along with some wonderful new friends that represent a wide spectrum of chronic illnesses. *

Immediately after my return, I’m off on a bit of a vacation with my husband to celebrate our 20th wedding anniversary. I may be able to do a random post or two, but no promises until May!

Thanks for checking in.

*Janssen Global Services is paying for my travel expenses for the HealtheVoices conference. All thoughts and opinions expressed here are my own.

Can Pain Be Measured?

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You know that question they ask? The one where they want you to rate your pain on a scale from one to ten. Sometimes there’s even a chart with a smiley-faced “one” that progressively changes into a very unhappy “ten”. I hate that question. First of all, the person asking it may not really care, they’re just filling out a form. Secondly, RA-related pain can vary not only from day-to-day but minute-to-minute, so how do you quantify it?

I once built my own pain scale based around Disney’s Seven Dwarfs. The scale ranged from “Happy”, meaning no pain, to “Doc” when it hurt badly enough to see a doctor, to “Dopey” when I had to take enough pain medicine that I wasn’t functioning very well. It wasn’t any more useful than the “one-to-ten” scale, but it was a lot more fun.

Doctors and patients both will tell you that pain is very subjective. What is extremely painful for one person can be perceived as mildly painful for another. There is a lot of discussion of why this is including individual tolerances for pain as well as associated emotional elements. And while perception really is often reality, it seems that it would helpful for everyone if there were clinical, quantitative ways to actually measure pain.

Which brings me to something very interesting that’s been happening to me.

Read the rest of the post here: https://rheumatoidarthritis.net/living/can-pain-be-measured/

Growing Pains

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plant-seedlingI seem to be growing things.

Unfortunately I’m not talking about yummy vegetables or fragrant blossoms. I’m not even talking about gorgeous fingernails or long, lustrous hair.

I’m talking about weird lumps and bumps and things I’d rather not have.

I have already documented the cysts that showed up on my mammogram. Enough said about those.

Around the same time that those appeared, I was undergoing physical therapy on my left calf. My therapist found a rather large (painful) nodule on my tendon. As she put it, I have nodules where I’m not suppose to have them. Since then, there have been some smaller nodules show up in the same area.

And most recently, I had a sonogram which revealed a small nodule on my thyroid glad. We’re discussing a CT scan or MRI next. Thyroid nodules aren’t that unusual, especially as you get older — except for the fact that I’m on a drug that causes thyroid cancer in animals and may contribute to it in humans.

I will probably have Achilles tendon/ankle surgery in early summer and those nodules will get addressed then if they, in fact, need anything more than to be left alone. I have my annual physical in about a week and we’ll discuss the thyroid concerns at that time (and we’ll have my thyroid labs back by then as well).

Individually, none of this is very concerning and none of it seems to be directly related to RA. It’s just weird that I seem to be growing these weird lumps and bumps all at once. These have all popped up in the last 60 to 90 days.

I hope whatever lumps or bumps show up in your life are the result of wonderful adventures. Thanks for checking in.

HealtheVoices Conference

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I think one of the best things that has come from writing this blog is the connection to other patients and bloggers. It has really underscored for me that today, more than ever before, the patient’s voice is being heard. I am also regularly overwhelmed about HealthEVoices_logo_squarethe commonality that those of us with a chronic condition share. It doesn’t seem to matter whether we have RA or diabetes or Hepatitis-C or what — so many of the challenges (and victories!) are the same.

I therefore count it as a wonderful privilege that next week I am once again able to attend the HealtheVoices conference that brings together bloggers and social media advocates from a wide range of backgrounds and who represent a multitude of chronic conditions. A major focus of the conference is to help us make the most of our patient/advocate voices and help us leverage these platforms to not only tell our individual stories but to better reach those who need to hear them. Of course, I also go to renew the wonderful friendships I have been able to make.

This conference is made possible through corporate sponsorship — sponsors who believe the patient should be a voice in the healthcare landscape. So I thank them for their vision in providing this conference and for the personal support they provide to make it possible for me to attend. Janssen Global Services is paying for my travel expenses for the conference. All thoughts and opinions expressed here are my own.

The Good News – Bad News About Triple Therapy

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For whatever reason, I’ve lately been reading a lot about the effectiveness of triple therapy for rheumatoid arthritis. The triple-therapy study was first presented at the European League Against Rheumatism Congress 2013 and published online June 2013 in the New England Journal of Medicine to coincide with the presentation. Triple therapy, which consists of three well-established DMARDs: sulfasalazine (a sulfa drug), hydroxychloroquine (Plaquenil), and methotrexate, was shown to have comparable benefits to a combination biologic/methotrexate therapy. (http://www.medscape.com/viewarticle/806430) These benefits included disease measures, function, and radiographic progression. All this boils down to saying the triple-DMARD therapy worked as well as a biologic/methotrexate combination.

So, if one is as good as the other, what’s the excitement? In 2013, the triple DMARD therapy was estimated to be more than $10,000 less expensive per year than the biologic-based choice. Given the rising cost of health care, that difference has no doubt increased since then.

The good news?

Read the rest of this post here: https://rheumatoidarthritis.net/living/good-news-bad-news-triple-therapy/

Surgery! Now What?

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I’ve you’ve been following my site for very long, you know I’m a virtual hardware store because of all the surgery and titanium implants I’ve had. The great folks at Mango Health asked me to share some of this experience to help others who are facing surgery. You can find this article here:

Mango Health Blog: http://blog.mangohealth.com/post/142242576434/surgery-now-what

Facebook: https://www.facebook.com/mangohealth/posts/1537428899607066

Twitter: https://twitter.com/MangoHealth/status/717028741331886080

Pinterest: https://www.pinterest.com/pin/433893745331291491/

Thank you to those whose words bring such clarity

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I’d like to start this post by quoting the Orange County Register’s March 25 article (the full article can be found here): http://www.ocregister.com/articles/pain-709555-cdc-chronic.html

For the CDC to issue such blanket guidelines is injudicious and irresponsible. It also displays the capricious and unpredictable nature of the CDC as the guidelines are a significant shift from the CDC position of just a few years ago. Then, it expressed great concern that not enough was being done by doctors for the pain sufferer, especially those afflicted with chronic pain.

I would then direct you to Warm Sock’s recent post on the matter. She is one of the most thoughtful and realistic bloggers in the RA space that I know. Her careful review of the situation has led her to readjust her position on the matter. Her full post can be found here: https://warmsocks.wordpress.com/2016/03/25/pain-meds/, but the following really struck a chord with me:

The fact is that prohibition didn’t work, and I don’t believe the new guidelines will work, either.

Both of these excellent pieces come in the wake of this week’s FDA’s new labeling regulations for opioid pain relievers. As Forbes says, whether they’ll have much effect isn’t clear. (http://www.forbes.com/sites/ritarubin/2016/03/23/fda-orders-new-warnings-for-opioid-pain-drug-labels-whether-theyll-have-much-effect-isnt-clear/#264cfb175117).

As always, I encourage you to add your voice to the conversation.

 

Weighty Matters

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The reasons for my weight gain are numerous and include months on prednisone, multiple surgeries (including three joint replacements, knee arthroscopy, and two spinal fusions) that kept me from being active for long periods, a stressful job that lent itself to ordered-in pizza and BBQ for the team, lots of travel and long hours that led to loads of eating out and not much healthy home cooking.

The effects of the weight are equally numerous and very dangerous. Besides the terrible toll that extra weight can have on your joints (on top of the RA damage), over the years I’ve developed high blood pressure, high cholesterol, high triglycerides, and borderline/occasional/oh-my-gosh insulin resistance and pre-diabetes.

Another important thing to consider is that fat, particularly belly fat, plays a part in developing chronic, long-lasting inflammation in the body. When you are fighting RA or other inflammatory arthritis conditions, reducing fat is a huge step in the right direction in helping control inflammation.

When I left the workforce a few months ago to focus on my health, I knew that nothing would make more difference in my life than losing the weight. Unfortunately, losing the weight generally isn’t the problem. I’ve lost weight all my life. I’ve been on so many low-calorie, low-carb, no-carb, portion-controlled, points-controlled diets that you could probably build a family of four out of the pounds I’ve lost (and regained) over the years.

But then I was talking about how I’d look in the swimsuit or getting back into my size 4’s. Now I’m talking about both the quantity and the quality of my life. And even though losing weight is harder as you get older (trust me on this) and being on all the RA drugs can actually make you GAIN weight, I have no other option.

The first thing I did was talk to my doctor who was (predictably) a major supporter of this decision. We talked about the four elements of weight loss:

Read the rest of the article here: https://rheumatoidarthritis.net/living/weighty-matters/

More Mammography Mayhem


Fair warning: This is not about RA and it may have way too much information for a lot of people, so this is your chance to stop reading.

When I had the cyst aspiration earlier, I specifically asked the radiologist whether or not they had found anything besides the one large cyst and he assured me they had not. I questioned this at the time because the area I was feeling seemed larger than what they described, but took reassurance from his words.

After the aspiration, I could tell the large cyst had been addressed (plus I had watched it being aspirated on the sonogram), but the other area I was feeling was unchanged. I had hoped that everything was connected and that the aspiration would address everything.

As it was time for my annual “feet-in-the-stirrups” exam, I made an appointment with my gynecologist and asked him specifically to check the area. Sure enough, there is an almond-sized cyst still in place adjacent to several smaller ones. I have no idea why this wasn’t discovered/addressed initially, but we are where we are.

Sheesh.

So I had a very frank conversation with my doctor about the situation and whether or not to be worried about it and whether to go back for another exam and aspiration. Our combined decision is to hold off at this time. Given that the first cyst was simple and benign, there’s not a high probability that these will be any different. And with everything else I have going on in my life at the moment, I just don’t want to deal with it. I doubt that I will wait until next year’s mammogram is due, but as I have paid my deductibles for this year’s insurance will probably address it later when things calm down.

It’s always something, isn’t it?

I hope that whatever “something” is in your life is a happy occurrence. Thanks for checking in.

 

Our Doctors and Infusion Centers Need Our Help


I received this because I am a member of Creaky Joints, but it is an important subject for anyone who is now or may in the future receive an infusion. I apologize that it didn’t copy very well from the email, but the link should take you to the site. If you agree after reading the information, I urge you to sign the petition.

Dear CreakyJoints member,
Our friends at the rheumatologist advocacy organization Coalition for State Rheumatology Organizations (CSRO) are asking for help from patients across the country in signing their Change.org petition.
Click here to sign
The Centers for Medicare & Medicaid Services (CMS) are in charge of setting the reimbursement rate for professionals administering Medicare Part B medications including all that are infused by professionals at doctor’s offices, infusion centers, and hospitals. Essentially, CMS dictates how much professionals are paid for buying, storing and handling, and administering Medicare Part B drugs.   For years, CMS has traditionally paid at a rate of the average sales price of the drug plus six percent (also known as ASP+6%). On March 11th, CMS released a proposal that would dramatically change this payment structure. CMS wants to run a real world experiment over the next five years where half of providers will continue to receive ASP+6%. The other half will receive a lower ASP+2.5% rate plus a fixed $16.80 payment.   The part of the experiment that pays providers at ASP+2.5% is so low that it will seriously threaten many infusion centers and doctor’s offices. These places may have to close their doors and stop providing infusions. For us patients, our only option going forward would be to receive our infusions in large hospital out-patient settings. These options are often much more expensive for us.   What’s worse, CMS released this proposal without engaging with any of the stakeholders who will be impacted. This was done behind closed doors without respect for transparency or patient-centered care.   Let’s stand with our doctors and infusion centers and sign the CSRO petition telling CMS this real-world experiment is not acceptable.
Sincerely,
The CreakyJoints team
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