One by one, I’ve had to put down things I’d rather have continued. I remember the moment when I could no longer quilt. Or knit. And the last piece of furniture I refinished, my rocker. My shoulders were bad at times, but my hands only ached. With medication and rest breaks, I pushed through it. It’s hard to tell you how glad I was to be able to get that done. Every other thing was set aside so I could accomplish it.

That’s the same way it was with the ACR meeting last fall. Emails, laundry, and other balls just dropped and rolled. More than the (extreme) physical difficulty, I just could not keep other balls in the air. It’s like RA itself takes the place of several balls, reducing my capacity. Or maybe RA just ties one of my arms behind my back so juggling is a bit of a joke. Probably both – RA is such a damn bully.

Sometimes it seems more like dodge ball than juggling. My son’s swollen finger, my several-months-long bladder infection, and countless other things like the avalanche of medical bills are obviously unwelcome balls flying into my circus ring. Then there are the balls that are very WELCOME like opportunities to speak or write about RA, letters I long to answer, friends I want to talk with.

Honestly, last week just adding the flu was enough to make me fumble every single ball. (Hear crickets chirping here on the blog?) But it was Bear’s birthday and I somehow helped Katie Beth to make cake and wrap presents. Thank God for Amazon.com! This week is Tiger’s birthday and we’re doing it all again!

Yes. I miss being able to juggle a dozen balls and wink while doing it. But this is my life right now. It’s infuriating to have a disease that never takes a day off – coming up on 6 years now with no break in flare. Maybe I’ll always grieve the things I can’t do. But I’ll also tell you that the little victories are extremely sweet. Whether laundry folded or a little blog post – or making one of my kids smile – I’ll savor any accomplishment!

Maybe I’ll always feel a little guilty about all of the balls lying around on the floor like deadlines I miss, my House Not-so-beautiful, food that spoils in the fridge because I bought it hoping I could cook it yet couldn’t. However, I will grow in grace and let God teach me more about mercy. No matter how much we think we’ve grown, our hearts can always be expanded.

Postblog: Please watch this video and think about attending G5 in March! You’re invited!

Recommended reading

• 10 Essential Facts About Rheumatoid Arthritis No Doctor Ever Told Me
• The Rheumatoid Arthritis Warrior’s RA
• What is a Rheumatoid Arthritis Flare?

My friend Bob had an EMG today, Tweeting during his test. I’ve heard several people say an EMG doesn’t hurt at all. And I’ve heard several others say it does. Including Bob. After it was over, I Tweeted, “I’ve heard sevrl varying reports of EMG exper. It must depend upon the actual TISSUE BEING TESTED & DX in QUESTION. #StatingObvious.” Of course, the machine or test operator could also make a difference.

About a decade ago, I had an EMG and nerve conduction study. No one hinted that it might hurt, so my expectations were not bad. The doctor insisted on clothes being removed, so I insisted on a nurse being present. It was very painful, but it mostly bothered me that I had not expected to be lying in a paper napkin for an hour in such humiliating pain. And then walk out to my kids in the waiting room and drive home as if nothing happened. That part was as bad as the pain.

In my case anyway, over a dozen needles were inserted from my neck to my hand. That hurt, but I tolerated it. They said that my nerves were sending information to the machine. Then more needles were inserted. This time, they said that they were sending information directly to my nerves and recording the response. Each of the new needles sent a shock (pain) and they recorded my response. As a mother of four at that point, I’d learned to be docile in response to pain (childbirth). I only breathed deeply as tears dripped across my cheeks. But, I had no control over what my nerves said.

Some people say EMG’s don’t even hurt. I looked around on websites after Bob’s test, and there is a difference of opinion. I’ll stand by my previous observation: sometimes they do, so it must depend upon the particular situation. I know – brilliant, right? But at least I assume that it is whatever the patient says it is…

My EMG results were abnormal. I’ve had pain from the cervical spine that travels down my right arm for many years. The EMG shows that my “muscles are denervated,” whatever that means. The doctor had no idea how to use that information to help me in any way. It was the end of the road for him. He said nothing could be done and he had no idea why it was abnormal.

Now that I have a diagnosis and I know about RA inflammation in the cervical spine, I have an explanation for the pain. I even have a solution of sorts, Radio Frequency Ablation.

That reminds me of Bob’s response: “You learn with age. Many things.” I am. I’m learning that certain things hurt some people more than others. That unpleasant experiences are worse when you don’t know what to expect. That even if tests are positive, there might not be a useful answer. That some doctors know more than others.

Postblog: About the un-resolution. I don’t make New Year’s resolutions because every day I resolve to do my best with what God gives me and leave the rest to Him. But I hope I’ll continue to be kinder to others and myself. And be more fearless in speaking the truth.

NOTE: be sure to read Health Central’s post today by Lene! I spent about an hour with her this week. I’ve followed her writing for about 3 years. What a thrill to be interviewed by a friend I’ve known from afar.

Recommended reading

• Dear Healthcare Facility: We Love This But We Hate That
• 3 Reasons Why the Public Image of RA Is So Rosy
• By the Way, I Have RA

It seemed that changing the name of a disease is a decision that’s not in the realm of patients. We can’t do that. It’s a job for organizations. With money. Who already control things. Which are not working well for patients… hm.

What changed my mind?

1) You did.

Spending > 60 hours a week communicating with other people with Rheumatoid disease impacted converted me.

Without my encouragement, people continued to press the idea that the name change is necessary. There’s no way I could count how many people have told me that they see a name change as a key part of the awareness solution. I’m certain it’s a vast majority.

For a smile, click to see Nancy and I discussing how Rheumatoid Arthritis could become Rheumatoid Autoimmune Disease – and my talking with Tanya and Valeska about creating a foundation for Rheumatoid that would be the RA foundation people have dreamed of  – and a few days later, Julie encouraging people to use RAD instead of RA.

2) The facts convinced me.

The fact is that Rheumatoid is not a type of arthritis. Arthritis is one symptom of Rheumatoid disease.

As I objectively studied the problem, I pulled apart threads like tangled yarn. Examining the origins of the confusion about Rheumatoid disease leads to clear conclusions about what must be done to correct it. The word “arthritis” is one unambiguous thread. My learning process included writing > 600 articles for this site and other publications. For a quick overview, click here to see the list of 57 articles labeled Rheumatoid Arthritis Awareness.

3) An RA / RAD foundation: the Rheumatoid Patient Foundation.

A few say we must first spend our energy convincing other organizations that they must change their ideals or goals to align with those of Rheumatoid patients and give us what we need. Do people with other conditions or causes wait to be given whatever change they need? No, they demand it.

A year ago, we created the Rheumatoid Patient Foundation which represents Rheumatoid patients themselves. Momentum was tremendous during our first year and people are eagerly telling us they want to help more! That support will only grow as people learn of the tremendous plans the Board of Directors has for the coming year. You are wanted and welcome to join us! Click here to read how to play a part right now!

More support for the name change of Rheumatoid Arthritis

While I could list links to comments, and quote emails and blogs advocating the name change all day long, I urge you to read about a rheumatologist’s plea to change the name of RA, Response to An Identity Crisis for RA by Dr. R. Franklin Adams. OK, here’s just one more remark supporting changing RA to RAD from e-Patient Dave deBronkart with an important point of grammar!

What’s next for RAD?

The RPF is bringing fantastic ways to make impact with the name change and for you to help make a difference! Please follow the RPF now by clicking here and here so you will not miss anything! We can all participate in creating the awareness of Rheumatoid Autoimmune Disease / Rheumatoid Arthritis that we’ve all longed for. You’ll be able to join in incredible events coming up including a video contest, RAD petition, and more!

Recommended reading:

• Hear My RA Interview on KISS FM!
• What Can We Do About the Rheumatoid Arthritis Awareness Problem?
• Woman’s Day Rheumatoid Arthritis Article: A Video Appeal
• Use the RA Info button for accurate awareness: Rheumatoid Arthritis (RA) Information
• Rheumatoid Arthritis Natural Treatment: The Beachcomber Article

There was an interesting discussion about wheelchairs and canes on my Facebook post yesterday. At the same time, there were a few other discussions going on about pain medicines. There is such a wide range of needs. But there are some things in common too:

1. Pain. Some constant, some intermittent.
2. Courage. Pushing oneself farther than others know.
3. Being able to decide when to take action to get help.

It seemed like one obstacle many have is a concern about being judged. Here is one area where awareness will make a difference. After all, what is so controversial about choosing a disability aid or pain medicine? What advantage is there to letting people suffer needlessly?

For anyone who wonders about people with rheum disease, beware of silliness!

Even with regard to wheelchairs, beware of assuming…

1. Assuming that one’s needs, abilities, resources, or difficulties are the same as others’.
2. Assuming that what works for one will work for others.
3. Assuming anything about a person’s disease based solely on appearances.

We need support & to be allowed to decide. On wheelchairs, pain meds, etc.

Whenever I talk about difficulty walking, someone criticizes me for not using a cane. I know I’ll never use a cane because my shoulders were the first to go. Well they fight for that status with my feet. So – no thank you – no cane for me. Don’t try to talk me into it. I will choose to use a wheelchair instead. Fortunately, it’s a rare thing so far, because I hate it. I hate sitting in a wheelchair in an airport waiting for people to move out of the way or hand me what I need. RA has made me more patient, but obviously not as patient as I’d like. How about some perspective though? Learning to deal with the patience in the wheelchair is just like tolerating side effects: I don’t like side effects, but I dislike the pain more. I don’t like the wheelchair either, but I dislike sitting on the floor unable to walk more. At least I have a choice right now. And I know the choice is mine.

Note: If you have a blog, check out the pain scale carnival. I’m still working on it so let me know if you write a post or draw a picture. It does not have to be an RA blog!

Recommended reading

• Is That Your Final Answer? …or Replying to Misconceptions
• Severe Rheumatoid Arthritis Versus Mild Rheumatoid Arthritis
• FDA Limits Acetaminophen in Prescription Pain Medicine

We have two endearing names for rheumatologists which I’ve coined over the years: rheum doc and The Wizard. Rheumatologists are the doctors who decide not to sneak out Osler’s infamous back door. I always give them credit for that: historically, they’ve been given some of the most “hopeless” cases in many ways with very few effective tools to make a difference. Fortunately that’s beginning to improve for a percentage of rheumatology patients.

I haven’t mentioned going off to see The Wizard recently and many of my readers know why: I’m in need of a new rheum doc myself. Last spring, we lost Dr. Smart in the disgraceful bone scan debacle. Last summer, I called several offices asking basic questions about insurance or whether they frequently treat RA. While both daughters were home to escort me, we visited an office where the woman had answered all the questions well. The doctor was even a member of the ACR, but he turned out to be the one we named Dr. Perv. His dismissive manner and beliefs were extremely similar to the rheumatologists I met in 2009 and to what other patients often describe, with the exception of the assault of course.

You can imagine why I waited a little while to try again. Later in the summer, I found a clinical trial only a couple of hours from home so that I could try one more treatment (Rituxan) instead of “just wait for something to be approved” which was what Dr. Smart had instructed me to do one year ago when the doctor ended the Actemra saying it cost the office too much money.

In this clinical trial, I’ve realized there is no rheumatology care or exams. The nurses take my vital signs and do a pregnancy test each time I come in. So, while I do get a treatment – Rituxan – I still don’t have rheumatology care – the kinds of things we talk about here like monitoring disease activity or treating to target.

We finally visited a new rheumatologist today. Here’s a partial list of what the rheumatologist said:

1. Doc asked how long “morning stiffness” is, but when I said I’m always stiff, looked surprised and repeated the question 2 different ways.
2. “I don’t know whether the previous treatments actually did not work on you since I did not see you and examine you myself.”
3. Doc asked about 10 times whether I have swelling, even though I answered specifically and affirmatively every time.
4. Doc spent several minutes examining hands and did not look at shoulders. Less than 30 seconds on knees. I had not mentioned hands, but said knees and shoulders are the worst right now. (My hands are getting worse and are always painful – they just don’t look bad most days – so I don’t mention them.)
5. Doc said to continue to take a full year of Rituxan treatments even if I they don’t help symptoms. “It is still removing the dangerous cells that could cause damage from the disease.”
6. After the Rituxan, doc said I should try Simponi and Cimzia. Said “some of them do work by the same mechanism as the Humira and Enbrel” which didn’t really work, but that’s okay.
7. After discussion of every medication on my list and every previous RA treatment, doc asked: “Have you tried Tylenol Arthritis?” I sat dumbfounded. When it was repeated, I asked “For my RA?” Then, “Yes, Tylenol.”
8. Doc asked more than once about how activity could make my joints more sore instead of less sore. “You mean it gets better through the day, right?” “No, it gets worse.”
9. When doc asked about previous imaging, I mentioned the nuclear bone scan results, but was interrupted twice to say I must have been confused about a DEXA scan. I continued to try to state that the scan showed inflammation. Doc said, “It showed inflammation?”
10. As follow up, doc ordered CRP and ESR, not anti-CCP or any other antibody.
11. Doc said to come back in 2 months. Nothing is to be done about my unusable joints such as knees which don’t straighten and have 2 year-old Baker’s cysts.

Several friends have asked for details, so I made this list. It’s a hard decision whether to publish it because the whole thing made me feel lonely and discouraged. My knees were in so much pain as they had to hang there off the table during the whole appointment. I could barely walk out of there and they acted like I was fine. Maybe we hoped for more up-to-date knowledge in a newly-minted rheum doc. I admit my expectations are pretty low at this point and I’ll wait to see the chart notes after my usually normal CRP and ESR come in.

The sad part for me is my joints are worse than ever and there are always more things that I can’t do. The Rituxan hasn’t helped at all and I’ve heard the world’s top docs say that treatment should be adjusted every three months if a patient is not “controlled” or in remission. But I’m supposed to just leave my knees (and shoulders, and all my other inflamed joints) like this indefinitely and take a whole year of doses of Rituxan and then go back on another TNF? Really? I’m not sure what choice I have, but I hope I figure out something.

Postblog: I’m really sorry I couldn’t think of anything funny to put in this post. As an antidote maybe you’ll want to see this funny post or this one to remind us how we help each other. Special thanks to Shannon, Bob, Dee, Sandie, and David for so much support yesterday.

Recommended reading

• What Is it Like to Have Rheumatoid Arthritis? Part 1: The Usage Principle
• 2 Reasons Monitoring Rheumatoid Arthritis Matters
• Rheumatoid Arthritis Swelling, Take Two
• All I Want for Christmas Is My CRP

Bottom line – that’s right – at the top of the post. But, please keep reading.

1. The various HAQ’s are mediocre tools used to gauge the effects of RA.
2. The RAPID3 is superior, partly because it’s more feasible, increasing odds of its being used.
3. If none of these measures are used in most cases, the debate is pointless.

When there are debates about patient outcome measures of Rheumatoid Arthritis, they are about which test is more consistent or accurate, not about whether they should be used. There are plenty of nit-picky technical articles about how to best compare and interpret various versions of the HAQ and other outcome measures, including this explicit discussion of clinical use and interpretation of RAPID tests.

But the question of its value seems to be settled: “A careful history and physical examination, including a nonquantitative joint examination, form the foundation of any encounter of a physician and patient with RA,” Journal of Rheumatology, Vol. 5, no. 11. In a fundamental discussion about assessing RA patients in 2009, RAPID3—An Index of Physical Function, Pain, and Global Status as “Vital Signs” to Improve Care for People with Chronic Rheumatic Diseases, Pincus wrote, “It is suggested that all rheumatologists would find it valuable to ask all patients to complete a MDHAQ and to score a RAPID3 at all visits of all patients in usual care.”

We’ve heard some of the top rheumatologists in the world start a conversation with, “We all do the HAQ and joint counts, but we know it’s not enough…” We do? My brother always used to ask me, “We? You got a mouse in your pocket?” It’s an 80’s saying that means, “You, and who else?” Do they assume all rheumatologists are measuring as they do?

Can we talk more about that mouse next time?

Pincus and Segurado reported in 2006 that “Most visits of most patients with rheumatoid arthritis to most rheumatologists do not include a formal quantitative joint count.” It’s not done either. It seems little measuring is done period, from the patients we’ve heard from so far.

If you are a rheumatology patient, how often does your rheumatologist count your joints or give you a RAPID or a HAQ to fill out?

If you are a care provider, how do you typically measure?

Postblog: We’ll continue to discuss measuring RA here. Whether you’re a care provider or a patient, I recommend the articles and PDF’s provided on this page by Pincus et. al.: “RAPID3 (Routine Assessment of Patient Index Data 3), a Rheumatoid Arthritis Index Without Formal Joint Counts for Routine Care: Proposed Severity Categories Compared to Disease Activity Score and Clinical Disease Activity Index Categories.” Some of these have been quoted on this site before, but this is a great list.

I realize the patients and doctors who read this blog are better educated and more involved and so may be more likely to be measuring, but let’s see what folks say over the next few weeks.

Edit: 9 am EST: Just saw this coupon in the email good today only for the RA Warrior t-shirt store. Too late to add it to the RSS feed but here it is!

The full scoop…

Cyber Monday Sale
Coupon Code: CyberMon11
Discount: 40% off all orders over $50

Dates: Today only, Monday November 28th

Disclaimer: Please enter coupon code CyberMon11 before completing checkout. Discount is applied to the base price and does not include commissions, taxes or additional charges. Email us if you have questions or need help calculating the discount for customers. This offer may not be combined with other offers. If word spreads like wildfire it’s possible some orders may delayed just a bit. Coupons valid from 11/28/2011 to 11/28/2011 11:59 pm Mountain Time.

Recommended reading

• Winter Solstice Lunar Eclipse: Was the Moon Really Red?
• Measuring Rheumatoid Arthritis Disease Activity
• Weight of Patient Reported Outcome Measures on Diagnosis & Treatment of RA
• The Value of Patient Reported Outcome Measures of Rheumatoid Arthritis
• A Paradigm Shift in Rheumatoid Arthritis Disease Activity? Part 3 

Certain issues need to be settled in order to improve patient care for RA. Some things that have been “understood” or taught for years are wrong. These issues lead to inconsistencies in the practice of doctors who care for RA patients.

Some of those issues have been taken head-on here like nowhere before:

• Usage principle and exercise
• Swelling myths
• A standard of care for monitoring

Another controversial issue concerns which joints can be affected by Rheumatoid Arthritis. In 2009, we began a discussion What Is the First Symptom of Rheumatoid Arthritis? There are about 375 comments, mostly by patients posting a wide variety of joints and diversity of symptoms. While joint symptoms are often debated, there is one little joint that has been singled out for debate more than any other: the DIP joint.

CAN THE DIP JOINT BE AFFECTED BY RHEUMATOID ARTHRITIS?
And if it can, why do so many say it cannot be?

How I became aware of the DIP RA debate

In 2006, RA moved like perfectly symmetrical dominoes through my body, systematically affecting every joint. For decades, the RA had preferred my feet over my hands (like Ann and others). My hands ached and occasionally joints locked up, but they weren’t terrible – except for the joints down by the fingernails – the DIP joints. Even though swelling was mild enough that it was not noticeable to strangers, dexterity was lost and those DIP joints hurt every day.

My first rheumatologist never challenged me about which joints were affected. She didn’t examine my joints or ever send me for imaging. She used to say it didn’t matter since the Rheumatoid disease is systemic and I already took treatment for it.

At that point, I had only begun to dig into RA research and had no idea that my hands were politically incorrect – or how lucky I’d been to be treated for RA when my hands “looked ok.” When I made an appointment with another rheumatologist in 2009, I was in for a shock. When doctors did not want to even examine RA that did not appear to be grossly swollen from across the room, I started asking questions of other patients and  reading everything I could get my hands on about swelling and which joints can be affected. That’s when I traveled to another state to get an ultrasound that would show the RA that affected my hands more every day.

That’s when I met Dr. DIP, who told us (I had 2 chaperones):

1. It is impossible for Rheumatoid Arthritis to ever affect the DIP joint.
2. The CRP is the only accurate determinant of RA disease activity.
3. Ultrasound cannot be used on any joint to examine RA, except for the MCP joints.

That night in my hotel room, I believed he was wrong; I wrote Is There a Typical RA? But not until I’d read some case studies and articles about Rheumatoid Arthritis in the DIP joint. Over the next couple of years, I looked for answers. I knew what my hands said. And I knew what other patients said. But, why would doctors try to tell us something different. How did it get so mixed up?

Historical evidence of Rheumatoid Arthritis in DIP joints

In 1909, Llewellyn Jones wrote that “Rheumatoid disease” rarely causes enlargement (swelling) of the terminal finger joint (DIP). I read about Jones’ work and that of numerous others in “A Study of Distal Interphalangeal Joint Tenderness in Rheumatoid Arthritis.” Some things I learned there:

1. Despite various types of evidence to the contrary, the myth that the DIP is not involved in RA has taken hold.
2. A vast majority of RA patients are DIP-positive (at least 70%).
3. A high level of inflammatory intensity is usually required before inflammation in the DIP joints becomes evident. “It is theoretically conceivable that all patients will exhibit DIP joint tenderness if disease activity is great enough.”

Examining patients with “fresh” eyes

The authors of the 1966 study wanted to learn why established “facts” did not correspond to what patients experienced. By studying what patients actually experienced, they found answers. “Rheumatoid joint inflammation seems to be a sharply localized process that follows a prescribed pattern in each afflicted individual.” As Dr. Evelyn Hess is quoted in The Rheumatologist, “Every single time you see a patient, see that patient with new eyes and you’re bound to find something new.” Myths and prejudices like the DIP myth can interfere with examining a patient with fresh eyes.

Other articles discussing Distal Interphalangeal Joint (DIP) Rheumatoid Arthritis

• Instructions from The Pain Source for giving steroid injections for RA in the DIP joint (like I had last year).
• A majority of RA patients experienced joint space narrowing in DIP joints.
•  “The Articular Involvement in Rheumatoid Arthritis,” New Journal, 2004.
• Johns Hopkins is one of many medical sites that perpetuates the myth that “Rheumatoid Arthritis does not affect distal interphalangeal joints.”

Recommended reading

• What Is it Like to Have Rheumatoid Arthritis? Part 1: The Usage Principle
• What Is the List of Rheumatoid Arthritis Joints?
• What Is the First Symptom of Rheumatoid Arthritis?
• 10 Essential Facts About Rheumatoid Arthritis No Doctor Ever Told Me

It was a day filled with misconceptions about RA, and it really bothered me; but I didn’t figure out why until this morning. I hate being misunderstood and when it’s about RA, it bothers me more because I feel like I’m judged as a failure, a bad mother, an un-giving person, lazy, or dishonest. Just once, it can make me feel like I got kicked in the gut. Yesterday, I had that experience repeatedly.

Katie Beth and I were discussing a brief encounter with a doctor and we started laughing about how great it could be if I could put the truth of all of this into the book called it Is That Your Final Answer? Then we started laughing about how some game show lines fit life with RA. Laughing always helps.

But the day was much longer, and in the evening, I was finally at home in bed with a sheet over my head, in too much emotional pain to write and too much physical pain to do anything else.

Do you ever have these encounters where you know someone completely misunderstands? Do you just let it go unanswered, for whatever reason? I’m trying to come up with answers I could have used that day – unspoken answers?

Vignette 1: Is that your final answer?

Nurse: “My best friend has RA, but she doesn’t take any of these medicines.”

Me: “Does it disable her? That helps people decide. I mean when I went on the drugs, I couldn’t put my arms up at all to -”

Nurse: “She has no choice. She is a single mom. She works and does everything for him in spite of RA because she puts him first. He’s in high school, but she wants him to have everything… (5 minutes more)”

Answer UNSPOKEN: “People with RA really do get to a point when they can’t do some things. We still put our children first. It’s not our choice to have a disability either.”

Vignette 2: You are the weakest link

Doc: “Twenty percent of women with inflammatory arthritis actually have a chronic pain syndrome instead of active disease. It’s just pain, right?”

Me: “No, my joints are also stiff, swollen, grinding, weaken –”

Doc: “But how much do you exercise?”

Me: “Well I do as much as I can, but I can’t do a lot of things now. I used to lift 50lb. bags, but my joints-”

Doc: “How do you sleep?”

Me: “Like a rock.”

Doc: “But you don’t feel rested, right?”

Me: “No, morning is the best time of my day.”

Doc: “Have you tried Tramadol or Cymbalta?”

UNSPOKEN Answer:  “I have a fever every day. I have a fever right now in this cold office for 3½ hours. But you aren’t taking my temperature.  You haven’t ever examined my joints or read my chart. You seem to have a preconceived notion that you’re trying to fit me into. Apparently you can’t fathom this, but I have actually tried to do all of the things I say I can’t do. I didn’t just lie there and say ‘I can’t.’ I found out that I can’t because I tried, and I can’t. Perhaps the reason is that RA can inflame tendons and cause sudden weakness, stiffness, or instability. Whatever the reason is, I’ve gotten letters from hundreds of patients who experience the same things as me. And even if I were the only one, it’s still true.”

Vignette 3: Let’s make a deal!

Identity withheld: “She has RA too. She can put up the tents and sleep on the ground. And still do everything.”

Me: “I don’t know anything about her or if medicine helps her-”

IW: “Her daughter has it too and she’s ok.”

UNSPOKEN answer: “Let’s make a deal. I won’t assume you’re being insensitive if you don’t assume I’m being lazy.”

Deal or No Deal

Seriously, like most people with RA, I’d like someone to offer me a deal. Don’t most of us take whatever’s behind Door Number 3 or Curtain Number 2 (like medicines we’ve never tried before!) because even though it’s unknown, it must be better than what we have? If we wait hours every month at the pharmacy or medical appointments, when they call our name, it feels like an announcer on The Price is Right saying, “Kelly Young, Come on down!” Personally, I’d buy a vowel or a lifeline or anything that could possibly help me figure out this puzzle…

I’m ready to say, “I’ll take ‘SOLUTIONS’ for 1000, Alex”

How can someone judge whether I’m truly weak or just lazy from across a room? Or if they know nothing about my life? If I say I’m trying my hardest, how does anyone know that I’m not? Is living life with RA a sentence to living life doubted? I truly hope not, but I’ve been accused on both sides with occasional comments that hint: “Do you expect us to believe you’re really sick and still blog?” to others who insist: “If you were willing to try, you could exercise and feel better.”

I don’t know; I’m just doing my best and assuming the same of everyone else with RA. We really need someone to give us the benefit of the doubt.

How about you? Any UNSPOKEN ANSWERS?

Recommended reading

• 20 Things Not to Say to a Rheumatoid Arthritis Patient
• Health Blogging: Complications and Blessings
• Don’t Take Those Meds for RA or Juvenile Arthritis

The relationship between exercise and Rheumatoid Arthritis

One of the first things that tips me off that someone does not understand Rheumatoid Arthritis is the promotion of exercise as a therapy for active Rheumatoid disease. As well documented in the other exercise posts, the relationship between RA and exercise is has always been clear:

1. Exercise is healthy for RA patients, as it is for everyone else, when the joints are not in flare.
2. Flaring joints should not be used vigorously, but destructive inflammation should be quelled, as with an injury.

An exercise expert wonders why RA patients don’t exercise more

The level of misunderstanding about how to heal RA is sometimes hilarious.

Other times, it’s frustrating:

An article in Rheumatology News “RA Patients Shun Exercise, but Most Know of Benefits” features a survey that proves patients have gotten the message “Exercise is helpful to RA,” but don’t act upon it because they are in pain and worried about harming their joints further.

The survey was conducted by Ms. Rebecca-Jane Law of the School of Sport, Health, and Exercise Sciences at Bangor University, who says, “The benefits of high-intensity exercise in RA include improvements in aerobic capacity, strength, physical function, and psychosocial well-being.”

According to Law, “RA patients tend to be less active than… the general population.” She performed the survey of 247 patients “to determine why this might be,” “despite the known benefits of exercise.”

RA patients’ opinions on exercise

Over half of RA patients (52%) admitted that they did not exercise because it caused pain. Pain is a sign, according to experts, of active disease in a joint, meaning that it should be rested – not stressed. Several links to expert opinions support that viewpoint, but RA patients don’t need experts to tell them. They know when a joint is flaring too much to stress it. That’s why 44% of patients surveyed said they worried about causing harm to joints. Patients know what they are able to do. However…

Only 19% said they felt health care professionals knew how to advise RA patients on exercise.

Why not? Because, we live with the Usage Principle. We know the consequences of “high-intensity exercise” with active RA even though others might not understand it.

Exercise does not treat flaring Rheumatoid Arthritis

1. Some people have RA that only affects certain joints. Of course the unaffected joints can be exercised, depending upon systemic flaring symptoms such as fever and fatigue.
2. Some have RA which flares and remits; they can exercise between flares.
3. In no case does exercise itself lessen the flaring of Rheumatoid disease.

If you’re a care giver or medical professional uncertain about exercise with flaring Rheumatoid Arthritis, I recommend that you ask patients what it’s like to move with RA. Remember that 19% number and help improve understanding by learning about the RA experience. Here’s a start:

Consider the jaw and the sternum joints:

RA inflames the jaw, regardless of how much patients use it to talk or eat. Exercise does not prevent or improve it. However, moving it can become impossible during flares, making eating difficult. RA frequently inflames sternum joints, regardless of how much a person breathes to exercise them.

Consider the reality of exercise and RA:

I go shopping with my kids, stopping occasionally to rest or get snacks. Afterward, all of my joints are always stiff, painful, weak, and sometimes swollen. Typically, the next morning, I’m awakened with piercing pain in one ankle, the other knee, a hip, and a few toes. Both ankles are always tender and weak, yet 5 days after that moderate exercise, one of them is still flaring sharply. Does that one ankle not know that exercise is good for RA?

Please do not blame the victim. The people I know with RA do as much as they can every day. And many of them sorely miss the ability to exercise the way they did the day before they got RA.

Recommended article from Musculoskeletal Network about RA disease & exercise.

Recommended reading

• Other posts about Rheumatoid Arthritis and Exercise
• What Is it Like to Have Rheumatoid Arthritis? Part 1: The Usage Principle
• 10 Essential Facts About Rheumatoid Arthritis No Doctor Ever Told Me

Bonus: Ironic story about the over-exercising baby boomers and knee replacements

What is Rheumatoid Arthritis disease activity?

People living with RA know it can affect them in unexpected ways that don’t involve joints. Just reading recent comments here, you can see people talking about these effects of RA:

• Drastic weight loss
• Frequent low-grade fevers
• Ruined teeth from dry mouth or autoimmune activity
• Heart or lung damage
• Depression
• Debilitating fatigue
• Various eye problems

Speaking strictly of JOINTS

But even if we speak of joints ONLY, there’s a wide variety of symptoms. If joint exams are done, they are often done in the same ways, documenting only certain manifestations of the disease:

• Significant swelling
• Obvious deformity
• Erosion of bone in joints

But patients describe JOINTS with

• Sudden weakness
• Enlargement of bones at joints
• Tightness of skin attributable to swelling
• Gradual drifting, twisting, or deforming
• Inability to do usual tasks
• Uncharacteristic grinding, clicking, popping noises
• Pain from mild to severe
• Acute stiffness
• Sensations of pulling
• Sudden locking or spasms
• Swelling from mild to severe

Need for paradigm shift with Rheumatoid Arthritis disease activity

As much as we talk about what’s going on in cells with Rheumatoid Arthritis activity, these lists provide simple evidence of disease activity as patients experience it. However, these symptoms are not typically used to evaluate RA disease activity.

In Part 2, we’ll look at a possible paradigm shift in the way Rheumatoid Arthritis disease activity is viewed. PLEASE STAY TUNED for Part 2!

Meanwhile, please post what RA disease activity means to you!

• A Paradigm Shift in Rheumatoid Arthritis Disease Activity? Part 3
• A Paradigm Shift in Rheumatoid Arthritis Disease Activity? Part 2

Recommended reading

• Joint Examinations with Rheumatoid Arthritis
• 2 Reasons Monitoring Rheumatoid Arthritis Matters
• Excellent Rheumatology Care with a Horrible Rheumatoid Disease