My bad

1. While I did dream of building a comprehensive website for RA, I had no idea the impact it could make.
2. Or how much hard work would be involved.
3. At first, I thought that I was mostly alone; I supposed that most people with RA fit textbook examples, responded well to treatments, and usually received appropriate medical care.

The biggest thing I learned was that I was not alone. It took a year to convince me it was safe enough to write my swelling confession. Since then, I’ve realized a majority of patients do not fit the “typical” RA in books. Tens of thousands of comments tell the story.

Here are 5 stunning things I discovered

 1) There is a great divide in rheumatology understanding with regard to various symptoms, especially conspicuous swelling. Too many doctors are not aware of current research or treatment recommendations. There is a stark contrast between the levels of quality of rheumatology care patients receive. A standard of care is needed.

2) Most descriptions of “typical” RA presentation are inaccurate and inadequate.

3) Academic credence is given, by some, to a belief that the severity of RA pain is exaggerated. Medieval theories about women and anger are reincarnated, impeding progress, and using modern words such as hypochondriasis.

4) Highly specialized research is revealing what Rheumatoid disease often entails (such as lung involvement). However, people who live with RA are the only ones with full comprehension of its symptoms. The patient voice is urgently needed and perilously absent in the educational, legislative, research, and industry arenas.

5) Most people who live with RA are the bravest, most optimistic people in the world. People who care for them are a close second.

I’d like to meet & thank every one of the millions of visitors to the site.

 Who knew I’d make friends like the phenomenal Kevin Purcell, rockstar mentor Dave deBronkart, Mayo Clinic’s extraordinary John Davis, the fearless yet gracious Donna Cryer, and meet sisters like Barbara, Nancy, Dana, Shannon, Karaleigh, Jamie, Jenny, Carol, Kim, Vi, Steph, Connie and brothers like Trey, David, Randy, Bob, Jay, Jason, and so many more…  and my Twitter #rheum-mates, my Facebook family and MD’s who seek patients’ best interests, especially Lothar Kirsch and Shashank Akerkar, Carlos Caballero, Paul Sufka, and Ronan Kavanagh!

While we have 15,000 fans on Facebook, 40,000 views on YouTube, over 18,000 comments, almost 1500 completed our 1st survey… numbers can’t really tell the story. PATIENTS tell the story in their comments, blog posts, and letters searching for needed help and support and sharing it with others.

This winter, I received the WebMD Health Hero of the year award for working with patients. This week, I was chosen by Sharecare as the top online influencer in the world of Rheumatoid Arthritis for working with patients. Last month, I finally created a Press tab to collect all that info that I’d lost track of.

Forecasting the future for Rheumatoid patients

I used to make lists, but I mostly gave that up because with RA, it became too discouraging. Even so, it haunts me the dozens of posts partially written and the dozens of projects not yet completed. But when I pry myself away from that, I look forward – and I see a different future.

From my unique vantage point, I see a future in which…

• Doctors are aware enough of Rheumatoid disease that people are promptly diagnosed
• Disease treatment options are applied or adjusted without delay
• Symptoms are treated instead of dismissed, doubted, or debated
• Research dollars reflect the severity of the disease and the millions affected
• Patients are not told by loved ones to forgo treatment for cherry juice, raisins, or jogging
• RA awareness brings appropriate accommodations / assistance when patients CAN’T do things

“I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I —
I took the one less travelled by,
And that has made all the difference.”
From The Road Not Taken (1916) by Robert Frost

Related posts

• List of posts about Patient Reported Outcome Measures
• Blog’s 1st birthday: History of Rheumatoid Arthritis Warrior Blog
• Blog’s 2nd birthday: Elephant Jokes for a Happy Two Year Birthday RA Warrior
• I’m Not All Better, Just Too Polite to Whine; Yet Victory Is Still Sweet
• My actual birthday: My Birthday Cards to Make You Smile

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Warrior to Washington: Next week, I’m going to D.C. to make an oral presentation to the “Arthritis Advisory Committee” at a hearing about a new Rheumatoid Arthritis treatment, tofacitinib. I want you to know why I feel it’s important and necessary for the patient voice to be heard. Erroneous public perceptions about Rheumatoid Arthritis or RA treatments can best be corrected by authentic patient testimony. Watch for my next report, but meanwhile, let’s look at why its needed.

Evaluating the Evaluator: How Consumer Reports got it so wrong on Rheumatoid Arthritis

The Symptom: ridiculous articles in the media like Consumer Reports’ “The Biologics”
The Problem: a complete lack of understanding of RA and its treatment guidelines
The Solution: patient voices bringing accuracy and context to the conversation

The Consumer Reports report on biologic response inhibitors is only a symptom of a wider problem. Rheumatoid Arthritis and its treatments are misreported more ways than Kraft serves cheese. We’ve covered some of the gems over the past few years (see partial list below).

I’ll point out some errors in the report, but I don’t want you to lose sight of the bigger picture. It’s not just Consumer Reports or ABC News or Woman’s Day. The problem is with Rheumatoid Arthritis being a disease that is misnamed and misunderstood. This is the reason for its longtime “Loser disease” status and the paltry research dollars.

Reading “The Biologics” in Consumer Reports might lead one to believe that current treatments for Rheumatoid Arthritis are effective for a majority of patients or that research and new treatments are not urgently needed. Here are 20 reasons I hated it enough to spend a whole day writing this:

1. “If left untreated, it can lead to irreversible joint damage” (page 2) implies that treatments prevent damage. While only 18% of patients we surveyed have no damage at all, 94% have taken DMARDs and/or Biologics. While there is evidence some treatments can slow disease progress in some patients, implying that treatment prevents damage is an overstatement.
2. “If those therapies fail to provide you with enough symptom relief, then it may be time to try a biologic” (page 2). This is not about symptom relief. The pyramid system, renamed as “step-up” therapy, is not as effective as aggressive treatment at reducing damage. Many opinions have been written about the data from the TEAR trials, but patients who respond to aggressive use of biologics (see chart page 28) fare best.
3. “We have chosen the following as Consumer Reports Health Best Buy Drugs: (1) Adalimumab (Humira); (2) Etanercept (Enbrel); (3) Abatacept (Orencia)” (page 2). Are you wondering whether I ever made it to page 3? Or what kind of dunce award I have for this journalism? Unfortunately, no one can predict which biologic will work for which patient (see Yacizi quotes here) and the choice of which one to prescribe at a particular time is a decision doctors should make with respect to the complex medical circumstances of each individual. Only 20% ever find a treatment that brings 70% improvement; it is a long shot.  Thinking that a “best buy drug” list for RA is even possible is absurd.
4. Page 3 contains a chart with a list of the “Generic Names” of each Biologic. These are not generic names; they are the names of the actual compounds contained in the products. Enbrel contains etanercept. The editors should have caught this discrepancy since other sections of the report bemoan the fact that no generic exists in the US, increasing costs.
5. “Actemra” is misspelled on page 3. I know it’s trivial, but I’m a teacher. And they claim to be  the expert judge that consumers should trust. They should at least proofread.
6. “Other treatments for rheumatoid arthritis often used with biologics include pain relievers or nonsteroidal anti-inflammatory drugs (NSAIDs) — for example, ibuprofen…” (page 4).  Lesson one when discussing Rheumatoid Arthritis medications: do not confuse disease treatment with symptom-reducing medications. NSAIDs do not “treat” RA.
7. I had problems reviewing page 5 since most every sentence contained some type of inaccuracy. The teacher in me wants to take a red pen to write “Do over;” but here goes: “Rheumatoid arthritis is characterized by pain, swelling and inflammation of the joints.” RA is more than inflamed joints; it’s a systemic disease.
8. “It most commonly starts in the small joints of the hands and feet” (page 5). No. I’m sure the writer read that somewhere, but there is no evidence that it’s true.
9. “Eventually all joints can be affected” (page 5). All joints can be affected from the very beginning, not eventually. Several patterns of progression exist, including full-blown onset with every joint affected.
10. “Your joints can feel stiff, particularly in the morning” (page 5). RA morning stiffness is like “morning sickness” with pregnancy: most women are nauseous, but it’s limited to mornings only in a rare few. Or in textbooks.
11. “Symptoms often come and go, and are often accompanied by fever or feeling tired or unwell” (page 5). There are various patterns of disease activity; this describes one of them. Others have more constant symptoms.
12. “As the disease progresses, sufferers can experience severe joint damage and fatigue, making it difficult for them to complete everyday tasks” (page 5). Damage can be immediate or slow. Fatigue is often present before diagnosis. Most patients have difficulty with daily tasks early in the disease, prompting them to seek medical treatment.
13. Blood tests for “inflammation” or Rheumatoid factor (Rf) are emphasized and the anti-CCP test is not even mentioned. While 40% of patients have normal “inflammation markers” and about a third have normal Rf, the unmentioned anti-CCP is more likely to be positive. And there are other options to view inflammation such as ultrasound or nuclear bone scan.
14. “(C)ommonly prescribed medications include pain relievers such as ibuprofen (Advil, Motrin, and generics), naproxen (Aleve, Naprosyn, and generics), and steroids such as prednisone and methylprednisolone (Medrol), which reduce inflammation and pain and slow joint damage” (page 6). Advil slows damage? They should add that to their television ads.
15. “Studies show that exercise programs improve the function of people with rheumatoid arthritis” (page 6). I’m certainly aware of the debate over the exercise myth. Asking patients, we have seen about an 80-20 divide between patients about whether physical activity increases or decreases disease activity (80% noting physical activity causes or exacerbates damaging flares). Patients with milder RA or who respond to treatments tend to feel better with activity. More to come on this thorny topic.
16. “(S)ufficient relief from your rheumatoid arthritis symptoms” (page 7). The entire article focuses on symptom relief. The authors seemed to have no idea that Rheumatoid disease kills people. I know that’s not popular to discuss, but it’s still the truth.
17. The comparison of different biologics on page 7 is silly. These studies are usually sponsored by the companies who sell the drugs. It’s not reasonable to compare different patient groups in different treatment settings and different countries. More reasonable comparisons have been made by literature analyses which compare several studies at once. I recommend Yazici’s editorial on the subject.
18. Page 8 is more silliness. Most people with RA can’t choose a treatment based on side effects. Only 20% of patients ever have a 70% improvement as a treatment response. There is no way to predict who will have which side effects and patients are often desperate to find reprieve and get some of their lives back. While treatment side effects are bad, the effects of the disease itself are usually much worse. That perspective was missing from the article.
19. Page 10 is a chart: “Important Considerations for Choosing a Biologic” which reads like we’re choosing a vacation spot. Most RA patients do not have the luxury of considering anything besides availability/cost and effectiveness. Finding an effective RA treatment is akin to winning a lottery, so other matters pale in comparison.
20. I’m not going to pick apart page 11 about choosing by effectiveness of a biologic because I’m tired and I’m sure you are too. Effectiveness is the most critical issue in choosing a treatment. Most RA patients do not have an effective treatment: About 30% improve 20%; about 34% do not respond; the remaining 36% experience from about 50 to 70% symptom improvement.

Noting some media gems covering RA:

• From AF: Rheumatoid Arthritis Natural Treatment: The Beachcomber Article
• “25 Years in Arthritis” – an Article on Rheumatoid Arthritis by ABC News
• Claiming RA doesn’t affect typing: Rheumatoid Arthritis Pain Is Not Our Only Pain
• The Woman’s Day problem
• 3 Reasons Why the Public Image of RA Is So Rosy

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The first blog post of this year told how I’ve come to prefer the term Rheumatoid Disease to Rheumatoid Arthritis. The response?  Within 2 days in Facebook-land, there were 294 Shares, 583 Likes, and 128 comments. There are now 1,000 Likes, 500 re-Tweets, and 80 blog comments. That’s people voting with their mouse: Yes.

But as I said back in January, there will be much more to come on this topic. Today, let’s look at 5 reasons that saying Rheumatoid Disease is better.

5 events show calling it Rheumatoid Disease could help

1) As researchers recently explain, Rheumatoid is a systemic disease, present outside of joints, and prior to articular abnormalities: “Rheumatoid arthritis (RA) is recognized to be an autoimmune disease that causes preclinical systemic abnormalities and eventually leads to synovial inflammation and destruction of the joint architecture.” So much for those saying “There is no RA before visible synovitis / joint swelling is diagnosable.”

2) Patients – and doctors – themselves are confused by the name. The blog has seen hundreds of these examples, but here are two from this week:

• An ENT specialist reacted to an RA patient complaining of vocal cord inflammation. “He looked at me like I was an idiot and said ‘But there are no joints in the voice box.’” (In case you didn’t know, one, that doesn’t matter since RA affects more than joints and, two, yes there are. Joints in the voice box that is.
• Another RA patient visited the eye doctor “after I came down with a bad case of Iritis and Epislceritis. When I asked my ophthalmologist what it was, he said ‘You have arthritis in your eye.’” This doctor knew the disease could affect eyes, but didn’t have a term to explain it. Saying “arthritis” in the eye is not logical since “arth” means joint” and there are no joints in the eyes. No, really. This time, there aren’t.

3) Non-articular symptoms of Rheumatoid would be more likely to be treated if the term were updated. We constantly see this struggle. The opinion of an expert: “Perhaps rheumatologists should consider revising the approach adopted in the routine assessment of RA patients by using an annual review form to include the systemic aspects of the disease in addition to its articular manifestations. This could be roughly analogous to the approach taken by diabetologists for decades, which has helped to reduce mortality through regularly recording of predictors such as blood lipid profiles, blood pressure, hepatic and renal function, together with a global measurement of disease activity.”

4) Researchers still don’t know enough about Rheumatoid disease to say why or how it attacks the body. Their work is better served with more accurate terms: “‘We call it rheumatoid arthritis, but we should really call it rheumatoid disease,’ notes Elinor Mody, MD, director of the Brigham and Women’s Hospital Women’s Orthopedic and Joint Disease Center in Boston. Rheumatoid arthritis can damage the whole body. Besides the joints, the ‘heart and lungs are the most commonly affected,’ says Dr. Mody. Doctors aren’t sure how or why rheumatoid arthritis causes other organs to suffer. ‘We don’t know the whole story,’ Mody says.”

5) Lives will be saved. Just last week, two more patients posted that their doctors dismissed symptoms, judging their disease according to their hands, even calling RA a hand disease. I’ve seen this firsthand as well as hearing from many patients that this common misconception lives on even in some doctors. Changing the name will correct this misconception and call attention to the need to treat the whole disease. In spite of common confusion that RA activity is concentrated in the hands, there are several dangerous aspects of RA that are more common than once recognized such as spinal damage, heart disease, or lung disease.

Bonus: Click here for a printable list of 10 reasons RA ought to be changed to “Rheumatoid Disease.”

Read Me!

• Don’t miss our brand new magazine page! Whether you missed a post or you are looking for a favorite one, you can find every post on one page – click here. Or click SeeAll on the menu.
• Click here to read Kelly’s new article in The Rheumatologist (the print magazine for rheumatologists) discussing the patient’s role in healthcare.
• In a new radio interview with Dr. David Borenstein, former president of the ACR, Kelly discusses ways to make life better for people living with Rheumatoid disease – click here to listen.

Recommended reading

• Preclinical Rheumatoid Disease: There Are No Joints in the Lungs
• We Refuse to Be Mislabeled: Updating Rheumatoid Arthritis (RA) to Rheumatoid Autoimmune Disease (RAD)
• Rheumatoid Arthritis Complications
• Articles about Rheumatoid Arthritis and the spine

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Aren’t X-rays and MRI’s infallible?

I used to think that imaging is the one certain thing in medicine. A friend’s broken pelvis taught me differently. It was fractured, whether we had evidence of it or not. I was one of the people who believed in her the whole time, but her treatment would certainly have been drastically different if her doctors had.

My neck has been giving me more trouble than ever. The Radio Frequency Ablation from last summer must be wearing out again. A few weeks of Oh it will get better has not made it so. Like many of us, I dread the next MRI. Here are a few things to remember when the time comes.

7 things to consider when you get imaging such as MRI

1) MRI to detect inflammation. Researchers in Greece studied the The usefulness of magnetic resonance imaging of the hand and wrist in very early rheumatoid arthritis. Very early Rheumatoid Arthritis or VERA is characterized by bone edema, synovitis, and marginal erosions that cannot be assessed by x-rays. They found that “MRI, by detecting these lesions, may play an important role in the management of these patients.”

2) Position. A radiographic technologist explained to me the importance of diverse positions for x-rays to be of any value with RA. She said my x-ray order would only have been sufficient if I had been in a car accident, but not for RA. Imaging can be done from various angles or sides with certain machines such as the stand-up MRI. X-rays and ultrasound can also be done with motion. I haven’t had it done, but patients and technicians tell me it’s possible. And I’ve read about it in fairy tales journals.

3) She also described the benefits of stand-up MRI, especially with the spine. If that procedure is new to you, you’ll love this page full of case studies about what a difference the stand-up MRI made for some patients. You will be STUNNED at the impact the stand-up MRI made in so many diagnoses and treatment decisions.

4) Musculoskeletal ultrasound (MSUS) is operator dependant, requires extensive experience, and few are expert at its use yet in the States.

5) Save hamburger buns for hamburgers. The “hamburger bun” is a type of MRI that makes a patient the middle of the sandwich. It is slightly less invasive than a tunnel-shaped MRI. However, unless the problem is very simple or the time in the machine is intentionally extended, the lower quality image is makes it the wrong choice for many.

6) Different imaging tools are more appropriate with different anatomical parts or particular conditions. For example “MSUS may be used for investigating median nerve impingement by detecting nerve swelling proximal to the point of compression” or “for quantifying cartilage within the joint spaces;” while “In most joint regions, MRI is better than MSUS for finding erosions,” The Pros and Cons of Ultrasonography for Rheumatologic Conditions.

7) The stars have to be aligned properly. Seriously, nothing is foolproof – even imaging. All tests must be performed, read, and interpreted correctly. And patients’ symptoms must be paramount.

Note: The March issue of The Spear, my personal newsletter went out over the weekend. If you did not receive one, you can click here and I’ll send you one. You’ll read more about the wild verbena flower image created in honor of my mom’s birthday. I’ve turned it into some lovely t-shirts that could make beautiful Mother’s Day gifts – click here to see them. (Most of them are there now and more are on the way!)

Recommended reading

• 10 Reasons We Might Want a Musculoskeletal Ultrasound (MSUS) of a Joint
• Evidenced-based Medicine or Easy-bake Oven: Tension Between Evidence and Reality
• Ultrasounds for Rheumatoid Arthritis, Part 3
• 10 Dumb Questions About an MRI for Rheumatoid Arthritis
• Hysterical Symptom Diagnosis, Part 1 (about my friends broken pelvis)

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A reader asks about doctor’s ratings of Rheumatoid disease being required by third-party payers (insurance companies, etc) presumably to justify spending related to Rheumatoid disease treatment. She wrote: “according to my rheum today there is a lot of pressure by the insurance companies to having every patient rated using the RASS scale. I am nervous of a scale that doesn’t include my opinion on how I think I’m doing and I get the feeling my doc didn’t (like it) either.”

We’ll look specifically at the Rheumatoid Arthritis Severity Scale (RASS) in a moment. Consider first why an RASS is wanted.

Treating Rheumatoid is expensive because the disease is progressive and destructive and treatments are costly. It makes sense that payers would seek evidence that it’s worthwhile to treat RA patients since they seldom achieve remission and are never cured. That evidence is hard to get for several reasons:

1. Measures of Rheumatoid disease activity are still in a crude state of affairs.
2. Measuring response to treatment is usually based upon a subjective opinion of a doctor.
3. Various treatments are very effective on a minority of patients and there is no way to identify beforehand what works on whom. Treatments often also quit working.
4. Cost-effectiveness is difficult to ascertain since disease pattern is not easily predicted; it’s difficult to determine how many joints have been saved or years of work have been preserved in a patient who responds to treatment.

So, yeah, I get it. They don’t want to “waste” money on us with no guarantees.

I’m sure patients would like some guarantees as well before they risk their lives or spend a fortune on treatments. Unfortunately, science has not caught up with that.

What about the RASS?

The Rheumatoid Arthritis Severity Scale (RASS) was developed in the 1990’s and published in the Oxford Journal of Rheumatology in 2000. It does not seem it has been cited often and the only recent citation I found is the 2010 article about the discordance between patient and physician assessments in RA, a topic we’ve mentioned previously, Physician Discordance in Assessments of Global Disease Severity in Rheumatoid Arthritis. While I see reasons to desire such a scale as discussed above, I doubt this RASS will become the tool of choice.

There are also objectionable aspects to the RASS described in the Oxford Journal. Some of these have been discussed on this site previously as significant  problems in rheumatology research or care.

1. An assumption of a “tendency towards somatization” or “dysphoric mood” in RA disease which is assumed to interfere with patient outcome measures.
2. An assumption that “the judgements of rheumatologists” are as accurate or superior to patient self-report measures.
3. “Chart review” and “x-ray evidence” are used by physicians completing an RASS, concerning because of medical chart errors.

It says they think RASS is quicker than the HAQ but just as accurate – as if that’s encouraging. We’ll save my improvement suggestions for the HAQ for another day.

Has your doctor or insurance company mentioned the RASS or another scale to you?

Fun Moment:

 “RA” it stands for lots of things – I also Googled RASS. These are from Google’s 1^st page:

1. Urban Dictionary says it can be any kind of BS. (RASS for slang)
2. Richmond Agitation Sedation Scale (RASS psychiatric)
3. Resource Allocation Selection System (RASS for military)
4. Request for Approval of Short Sale (RASS for Fannie Mae)
5. Richmond Area Speleological Society (RASS for caving)
6. Residential Appliance Saturation Study (RASS in California)

Recommended reading

• Patients & Doctors Differ on Assessing Rheumatoid Arthritis Disease Severity
• The Mouse in My Pocket: We Are Not All Alone
• 5 Responses to Treating Rheumatoid Arthritis with Supplements

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Putting it as simply as possible, it is now known that Rheumatoid Arthritis is a systemic, progressive, destructive disease causing systemic inflammation and attacking joints, organs and other tissues. Ignorance of this fact creates problems for RA patients with relationships, employers, or insurance. We know that this ignorance often results in RA being misportrayed or even slandered by the media.

However the greatest problem with ignorance of RA is that its widespread effects on the body often continue unidentified or untreated.

We often see patients ask one another specific medical questions. There is an enormous need for medical information, solutions, and treatment for the myriad problems related to Rheumatoid disease. People ask, “Who should I call?” “Who will help me?” and “How do I know what I need?”

• What can I do about my jaw, neck, or other joints that are being affected when my doctors say it is atypical, unlikely, or impossible?
• Who can coordinate all the various specialists that I need to see? How can I get them to communicate about my care?
• Who will answer questions such as which over the counter medications are safe, which immunizations are appropriate, when to discontinue RA treatment before procedures or during antibiotics, etc.?
• How do I know which symptoms are caused by my RA or who to call when I have new symptoms or side effects?
• What kinds of tests are best to catch serious problems early?
• How can I get good emergency care for concerning symptoms or side effects?
• Where can I get adequate pain relief?
• What is the protocol for infection or other illness?
• Who will oversee care for my heart, lungs, eyes, GI, skin, or back problems when RA-related?
• I have strange symptoms that no one discusses with me. How do I know whether RA is affecting my veins, arteries, or organs?
• This is NOT a comprehensive list by any means, only illustrations.

Some rheumatologists provide care for some of the things on this list, however most people with RA will meet each one of these questions at some point. Too often, they will not find a timely or accurate answer. Most do not know the answers to these questions because clear answers to these questions do not necessarily exist. We could consider the heart as an example, but dilemmas exist with many other matters. While select cardiologists study specific ways that RA can affect the heart, most are unaware that an association even exists.

Back to the email; the letter was typical of many I receive:

• Like most of us, the sender used humor. “Which doctor or Witch Doctor do I call?”
• She described a lifetime of symptoms related to RA, but not identified as such. Ignorance of RA left her waiting for answers.
• With mysterious hives, her doctors tell her to call a different specialist.
• She worries about heart palpitations and GI problems.
• She considers that her Enbrel treatment is working because her pain is reduced, despite other symptoms.
• She thanked me for validating her symptoms so she doesn’t feel “crazy.”

My frustration is that there doesn’t seem to be coordination amongst doctors. My primary care doctor isn’t the right person for this. I tried using him years ago to coordinate my thyroid issues and he always seemed “surprised” that I was still symptomatic even though the blood tests were “within normal range.” The fact that I’ve shuffled from one specialist to another for over 20 years and no one ever caught on to this RA makes me mad. I even went to another doctor for a physical about 10 years ago and said, “I feel like an old lady in the morning and these things hurt …could I have RA?” and she said, “sure sounds like it could be” and sent me to a rheumatologist. He, of course, found nothing – just said I had “myofascial pain” and offered to do trigger point injections. Since I’m not RF positive, I guess that’s why no one thought I had that…but what they thought I had is beyond me. I go to a good rheumatologist now – but I still feel unsure of what her “realm” is. The Enbrel is working – pretty well – my movement is better. I still have problems with joints, which she said is due to the fact that there has been damage there from having gone so long without being diagnosed. The fatigue, although way better…and I mean way better (the day before I started the Enbrel, I was a lump on a chair – so out of it) – I’m still challenged with the fatigue though. This has been a bad week (headache, hives, fatigued – not sleepy, just in this fog and my body just has no energy). So I’m not sure who to call.

Everyone expects a person diagnosed with Diabetes to require various specialists and be monitored for various complications. Even though some of the secondary diagnoses are as common with RA, routine referrals and screenings do not typically take place. We must see an evolution in RA care as well.

NOTE: Do you take Simponi for Rheumatoid Arthritis, Psoriatic Arthritis, or Ankylosing Spondylitis? You can earn $50 gift card with 30 minute short phone call! Click here to find out whether you qualify! If you’re interested, hurry because this opportunity is limited.

Postblog: It’s like watching The Terminal. RA is a Twilight Zone No-Man’s-Land disease. “Mr. Navorski, you cannot get into New York without a visa. You cannot get a visa without a passport, and you cannot get a new passport without a country. There’s nothing we can do for you here.”

Recommended reading

• Santa, Bring Her a Rheumatologist Please
• What’s Your Advice for Shoes for Rheumatoid Arthritis Feet?
• What’s the Big Deal about Rheumatoid Disease?
• You’re Cordially Invited to Make SWEET MEMORIES with Other Warriors & Friends! [video]

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The challenge of being believed

One of the challenges that many patients with chronic illness face, is the treatment they receive from some in the medical community. In my conversations, tweets, emails and Facebook notes with other RA patients, I have been disturbed to find out how many have difficulty having health care professionals believe them when they are hurting or in need of treatment. In most of these cases, the patient’s own testimony as to their symptoms and what is happening inside their bodies is just dismissed. There are some cases where additional diagnostic testing or simply being informed could help, but this is not what is happening to some. Both Melissa and I have been on this side of road. In Melissa’s instance, it meant something that could have been easily fixed but turned into major surgery with unbelievable complications and post-operative infections. In my case, it meant being told I was depressed and my pain was due to this. In each instance, if the medical professional would have not dismissed us as patients and our symptoms, treatment could have been started sooner and at a much lower cost. Thankfully we did not give up and our family doctor kept fighting for us until we got the answers we deserved.

The covenant between a patient & his doctor

I am fortunate that I have a very special relationship with my rheumatologist. As you have read previous notes, you know that his care and support have helped to keep me on the path to find the answers we need to treat my condition. After my nerve block was performed, I had an appointment to see him to track the progress of the nerve block. When the doctor walks into the room the first thing he says to me is he is sorry. I asked him why, and he said it has been a very crazy day with several emergencies that came up that just needed attention. He asked me how I was doing and I told him that the nerve block has definitely made progress on one type of the pain. He was relieved to hear that. He told me that he woke up at 3 am this morning worrying about me. I was touched and asked him why? He stated that he has yet to relieve my suffering. Relief of suffering of the patient is paramount to his practice. It is not only treating the disease, but also treating the overall condition of the patient.

As we continued to talk, I expressed my gratitude to him for continuing to search for answers for me in my treatment. I was a very difficult patient to pin down with a diagnosis. With the exception of a positive Rheumatoid factor, I had no other outward signs of this disease nor did traditional diagnostic testing confirm RA. It was because of his belief of what I was telling him were my symptoms, that we went with unconventional methods for diagnosing, like the use of the nuclear bone scan. I shared with my doctor some of the stories that others have shared on rawarrior.com or through twitter. How their rheumatologist dismisses them and how they leave no better and often in a much worse state than they were before. This is when my doctor began to speak of what he calls the covenant that needs to exist between a patient and their doctor.

The covenant is to not only treat the disease but to also treat the patient and their overall condition. He said the problem today is there are still too many people in the field that see this as a way to create a lifestyle, not as a way to relieve pain and suffering. He also stated that you have big business involved and while there are benefits to this it is not always a good thing. He did say this though: it is changing. What he is seeing coming up with some young doctors today is that passion for the patient again, the ones who are getting into medicine because of the human factor and wanting to do something about the suffering. As we wrapped up our conversation and I thanked him for our partnership, he stated that it is the way it works the best. Oh and he did apologize again, this time was for needing a haircut.

The future of medical treatment is definitely rooted in values established in the past.

• Values and oaths that were sacred and established a long time ago never go out style. They are as important today, if not more important. Yes, I am referring to the Hippocratic Oath.
• A covenant must exist between the patient and the physician, meaning both respect each other as individuals and professionals and provide open and honest dialog to each other.
• The doctor/patient relationship has entered a new age. It is an age where the patient is more knowledgeable about their condition than ever before. It does not make the patient more knowledgeable than the professional. It arms the professional with one more tool to treat the patient. When these two work together, the empowered patient and the medical professional, the outcome potential could be unbelievable. I am experiencing this in my care regularly and it is where it has to go for everyone.
• No-one knows better about what is happening currently than the patient himself. This should not and must not be readily dismissed without proper consideration.
• The patients’ increased knowledge does come at cost if it is not presented to the professional in the correct manner.

Yes the future is rooted in the past, rooted in the respect the patient has for the professional and the professional’s respect for the patient. That is the history of medical care and it is also the future.

Postblog: Promoting awareness

For those of you who are my Facebook friends, and those of you who are my new friends through Twitter, you have come to know that I when I write these notes, I am writing about my experiences as individual with a chronic auto-immune disease. My perspective is also unique because, not only do I have the role of a patient; I am also the spouse of someone with an auto-immune disease. So to say that auto-immune, chronic illnesses have impacted our life is an understatement. The reason I write these blogs, is to educate others who may not understand or comprehend the complexities of these types of diseases. While I can count the number of these blogs I have written on two hands, I have been inspired by the work of Kelly Young, who has written hundreds of blogs, educating, counseling and increasing the public’s awareness of the perils of Rheumatoid Arthritis. Her blogs alone have given me more knowledge to fight my disease than I could ever hope to have found on my own. So now I write in order to get the word out, share her message and increase the advocacy in the smallest way. If 200 more people are aware, then we are winning. We are launching the first non-profit patient foundation for Rheumatoid Arthritis patients: the Rheumatoid Patient Foundation is at the forefront of patient advocacy. Its goal is to improve the lives and the treatment of those with rheumatoid disease.

NOTE: David recently repeated his nerve block since the effect only lasted two weeks. His doctor is working with him in an aggressive treatment plan to address his severe disease activity. We’ll post an update on his story soon.

Recommended reading:

• The Path of Mercy in Medicine: A Tale of Two Doctors
• David’s last post: Excellent Rheumatology Care with a Horrible Rheumatoid Disease
• Another family’s story: Living with a Spouse with Chronic Illness, part 1

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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?

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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

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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

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