I’ll give it my best shot, but I’d love to hear your replies too. Remember, the name of the game is not to be nasty. But hopefully, we can still make it clear that RA is a serious disease with arthritis as its most well-known symptom.

1. Aren’t you feeling better yet?
   Some days are better than others. I know where you can donate to help find a cure.
2. You’re not old enough to have arthritis.
   No one of any age should have to suffer with a disease like this, especially the children who have it. I guess I’m blessed for the years I grew up without it.
3. Oh, I know; me too.
   I’m sorry if you don’t feel well. But if your doctor didn’t prescribe chemotherapy, I doubt you have the same diagnosis.
4. Exercise would really help you feel better.
   Regular exercise didn’t keep me from getting sick. I really miss the things I can’t do anymore, especially tennis, running, and swimming.
5. You don’t look swollen, sick, or ______
   Thank you.
6. Have you tried counseling? Maybe you’re depressed.
   Part of the reason I’m not depressed may be that I sought counseling after receiving this serious diagnosis. It helped me to accept it.
7. Why do you walk so funny?
   I’m not sure; it may be the damage to my hips or knees. But all of the joints in my ankles and toes hurt so much today, I can’t be sure.
8. No, it’s not heavy. Here, hold this.
   That might not be a good idea; I do drop things.
9. Have you tried the blue stuff?
   I’ve tried almost every color of medicine you’ve heard of. If your blue stuff successfully treated RA, it would cost a lot more.
10. You’re feeling achy. / The aches & pains of arthritis.
    Usually, RA pain is sharp so patients often compare it to an ice pick or a knife.
11. Why didn’t you try glucosamine (or Omega3 or gluten-free…) before you tried that medication?
    I actually do take some of those supplements, but they don’t treat my RA.
12. Just drink this juice. (Or eat blueberries…)
    I would have to drink several gallons of that juice day to get the temporary anti-inflammatory effect of taking an Advil. I take four Advil every few hours.  
13. Is that your handicapped parking tag?
    Yes, sometimes I can walk to get into a store, but I have a hard time making it back to the car.
14. You just need to lose some weight. (Or gain weight!)
    Thin people and heavy people both suffer from RA. It is a wasting disease, so eating well to be a healthy weight is a real concern, but it won’t make the disease less harmful.
15. I’m glad you’re better now.
    I wish you could see how I really feel, but not as much as I wish I really were better now.
16. At least it’s not cancer. It’s not like it will kill you.
    Some cancers kill more quickly than RA, but RA has a similar mortality rate to other cancers.
17. I read about a woman who cured hers with…vitamin supplements, antibiotics…
    I don’t know what her illness was, but I’m glad she feels better.
18. You just have a low tolerance to pain.
    I actually have a high tolerance for pain, but sometimes I have less tolerance for ignorance about this serious illness.
19. My Grandmother had that.
    I’m sorry. At what age did you lose her? Some of my relatives died of RA also.
20. I used Tylenol arthritis and mine went away
    Good. If it was RA, it will be back. Unfortunately.

Recommended reading

• Is That Your Final Answer? …or Replying to Misconceptions
• Laura’s CVS Commercial with Kelly’s CVS and the “a” Word
• Joint Effort of Rheum Patients Will Outshine Progressing RA
• Perseverance in Fighting Rheumatoid Arthritis

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It’s all good, right? Well, mostly… I mean, a lot of living with RA is actually hard or disagreeable, but we smile anyway. What are you gonna do, right?

I smile a lot. Little crows’ feet prove it. I smile through pain. A long furrow on my forehead proves it.

Like most of you, I don’t whine when it’s bad. It wouldn’t leave enough time for life. But if you heard my recent interview with Dr. Borenstein, you probably heard him say that I must be doing very well on treatments. What gave him that idea? I have to think it’s at least partly – that I keep smiling.

My first thought Monday (yesterday) morning was, “I can’t miss the plane again.” Of course, the plane doesn’t take off until Friday morning. But it takes me a long time to do things and I’m really busy, working about 16 hours a day with RAW, RPF, homeschool, and a lot of other things. I’ve missed more than one plane.

This morning I talked with a friend who got home from the hospital last night. Then, this afternoon I got a call from another friend who may need knee surgery. Both of them have had several spinal joints fused. My neck sounds like cellophane and I get the nerves burned away every few months, but I mention that it hasn’t been operated on yet.

When the call ended, I felt like the odd man out. Like I couldn’t properly understand how it is to be them, if I haven’t been there yet. It was silly, but I felt bad.

I won’t. Cry.

Anyway, then an interviewer called me and asked me to set something up that was impossible for me. I was obviously not understood. And, isn’t it worse when someone says, “I understand,” and doesn’t?

At one point, the person said, “And we need to get a shot of you doing things you do like sew or paint or garden or cook or run.”

<Silence.>

“Hello? Are you there?”

My smile faltered. My Sjogren’s’ eyes were dry, but my throat choked. “No. I used to do all those things, but I can’t… ”

<Silence.>

Me: “I am really busy… I’ve written hundreds of articles. And I talk to patients every day…” It went downhill.

“Maybe you can at least make a piece of toast?”

Me: “How about a picture of my laptop?”

It was the first bad interview/pre-interview in 3 years. I got off the phone and all I could think of was “I, I won’t cry” as in the song by Margaret Becker.

There’s a candle in the night
There’s a refuge within sight
I, I won’t cry
There’s a dream that I can hold
There’s a hope that I can hope
I, I won’t cry

I will keep smiling most of the time; I’m not going to wait until the pain lets up. But, when RA makes things a misunderstood mess, I’ll reserve the right to cry too. If my eyes can manage it.

NOTE: I’m sending out a special newsletter this week, so be sure you’re signed up – click here.

Recommended reading

• I’m Not All Better, Just Too Polite to Whine; Yet Victory Is Still Sweet
• What’s the Big Deal about Rheumatoid Disease?
• Ten Funny Things I Tell Myself about Living with RA
• The Me Before Rheumatoid Arthritis

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None of us want to feel weak or give up. How do we sometimes accept help without ever admitting defeat?

Yesterday, when I mentioned 10 Commandments of Chronic Illness, two men wrote comments with similar ideas:

• “I’m struggling with accepting how the pain has changed me and just admitting this will be with me forever no matter how hard I try to wish it away.”
• “In my mind, I’m still Superman… I have kids. How do I accept limitations, or ask for accommodations? I’m teaching them that I am no victim. Life what it is and to a great degree what we make it… I still have a hard time reconciling it all… Be well…”

What is the balance between being your superman-best and accepting needed help? Important questions!

First of all, our perseverance shows our strength

1. The starting point is realizing that people with RA disease are not people who stop certain activities because they gave up on life. They have a disease that can restrict or alter abilities against their will – either temporarily or permanently. Yet every person I know with RA tries their hardest to do as much as possible. If the invisibility of RA says “Lazy,” then RA is a “Liar.”

2. If you know people with RA, you also know that they tend to push their limits. They often suffer privately for the way they push themselves publicly, either daily at work or to be involved in special events with those they love. This shows they are strong, not weak.

3. If disease activity lessens or a treatment begins working, people with RA do more, OF COURSE. Anyone who thinks people with RA just need to try harder, complain less, or take anti-depressants to get over it has not been paying attention. When symptoms lessen, people go back to the activities they love.

“Limitations” or “accommodations” are not admitting defeat

This weekend, we saw a man carried up stairs in a crowded restaurant while his electric chair was carried separately. The same man adapts to go skiing and perform other sports competitively. Limitations and accommodations are part of his reality in certain situations. Yet, being a victim is not.

Another friend of mine earned her PhD dragging herself across campus on crutches. At first glance some might think her life appears limited by certain things that seem difficult. Yet her achievements surpass the rest of us in many ways because she has not been defeated by RA.

Examples from your lives could keep me going all day. To me and others who really know you, you are Superman, too.

If you love the way Superman steps up to save the world, you know there are times he needs his friends to save him from Kryptonite first. But Superman never ceases being Superman. And the moment the Kryptonite is removed, he flies free.

Recommended reading

• When Should People Living with Rheumatoid Disease Use a Wheelchair?
• What Causes Rheumatoid Arthritis Disease to Trigger?
• What Is it Like to Have Rheumatoid Arthritis? Part 2: Why Don’t They Tell You?
•  Severe Rheumatoid Arthritis Can Leave You Stuck in Orbit

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Many view Rheumatoid disease as something less than what it is and that leads to outrageous minimizing of facts related to it. Unfortunately, that is even done by many who have been charged with researching or reporting concerning the disease.

Over the last three years, I’ve communicated with those who do not have RA using as little emotion as possible because as an RA patient, I felt vulnerable to a cruel Catch-22 of this disease: the worse we portray the disease to be, the more it is assumed that it’s an exaggeration. Here on the blog, I’ve covered accusations of low pain tolerance and catastrophizing about a disease that can supposedly be treated by diet or lifestyle changes (see recommended reading below for some examples).

What is the big deal about RA?

This disease is a big deal to a significant percentage of patients who’ve lost physical abilities, careers, and relationships.

RA is a big deal to caregivers whose lives are also forever altered.

RA is a big deal to a majority of patients who live with extraordinary daily pain.

RA is also a big deal to many of us who have lost family members to it. Over the past few years, we’ve also seen loss in our community although it’s often played down partly because we don’t want to scare others. However on January 23 a warrior some of us knew, Cathy Russell, passed away and her family has asked that her memory be honored by contributions to the Rheumatoid Patient Foundation (Los Angeles Times obituary).

RA Warriors are people who often fight for every bit of life they enjoy. Some fight to get out of bed or be able to dress or eat. Others fight to keep jobs to provide for their kids. They do all this with few accommodations and in the face of a collective shrug from a world who thinks the disease is no big deal.

Warriors like Cathy are intelligent, sensible, and brave. They choose to fight a disease that often causes dangerous conditions such as infection, heart or lung disease, lymphoma, anemia, or spinal cord instability. Yet they fight with treatments which have their own additional risks.
RA is certainly no big deal to those who are deceived about it as Judi Ketteler was back in 2009. Her article in Woman’s Day drew hundreds of calls, comments, and letters to the editor from us. We’ve covered many similar articles. My friend Carlo showed me another one on Twitter yesterday morning that certainly depicts the ignorance often described by commenters here. We are used to it, but we are also aware of the damage it does.

I realize some will be turned off because they prefer to hear about “Woman’s Day RA,” an easy going kindler gentler version of RA that has a happier ending. However, I’d like to see the real RA cured. And that’s not going to happen as long as it’s no big deal.

Note:  Although the editors at Woman’s Day did not withdraw their position in response to our many letters, comments, and calls, there was a happy ending with Judi.

Recommended reading

• Rheumatoid Arthritis Natural Treatment: The Beachcomber Article
• Do Rheumatoid Arthritis Patients Have a Low Pain Threshold?
• Rheumatoid Arthritis Pain Is Not Our Only Pain
• “25 Years in Arthritis” – an Article on Rheumatoid Arthritis by ABC News
• Rheumatoid Arthritis Joint Damage Preventable with Lifestyle Changes?
• Patient’s Rebuttal to RA Pain Catastrophizing Claims
• Woman’s Day Rheumatoid Arthritis Article: A Video Appeal

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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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This month I’ve been more sleepy and fatigued than usual. It might be recovery from traveling the last few months. Or it could be this little thing called RA.

Whether it’s due the year’s end or fatigue, sometimes I sit in my rocker and gaze into space. Thinking about all the things that need to be done for patients. And making sure people can find more than the pickles in their rheum care.

I was amazed that several comments came in yesterday that served as specific reminders of why we’re here – all common themes on the site, demonstrating the concerns we address:

1. Feeling bad about being in so much pain with a spouse who does not understand. “I have felt broken and scared and as if i was the only one with this disease, with a husband that does not understand and thinks i am ‘wimpy’ and lazy and that i complain too much. Thank you.”
2. If we don’t speak up, the only voice that the public – or doctors hear – is the drug companies’. “The waiting room is full of ‘RA Awareness’ booklets, all published it seems by pharmaceutical companies. All of them show pictures of healthy active women – working, gardening, playing with the dog. All appear to have oodles of energy and joie de vivre, while I am sitting in my doctor’s office wondering if I have the energy to simply keep breathing.”
3. Delayed diagnosis & frustrated that symptoms are not understood. “Sometimes I wish my health-care-providers also had RA so they’d be able to relate alot better to what I’m going through.”
4. Losing a loved one to Rheumatoid disease. “I think it’s wonderful that u developed a site like this for people to research this terrible disease. My dad passed away Dec 11, 2011 at the age of 51. He had battle RA since he was 18yrs old and RA is what caused him to pass…”
5. Unwelcome life change. “I reduced my schedule to teaching kindergarten just half-time. RA has made me feel like I was totally inadequate. By the time my afternoon class was starting I was in so much pain I couldn’t think straight, much less TEACH 25 5 year-old-busy-children. It broke my heart. So, I went half time. My husband is furious. My children don’t get new clothes for school. It sucks. But I am much more productive and successful at school and at home. It’s worth the money-loss.”
6. Frequent participation of family members. “One thing we do now that my husband has RA is put all of his presents and the ones he wraps in gift bags. It makes opening presents less painful and hopefully more enjoyable.”

I know I’m one girl with a big voice, but I’m still just one girl. I always say, Together we can do more. That’s why we created the Rheumatoid Patient Foundation to accomplish the things that patients say they need. If you’ve ever wanted to help, please click here and read about what you can do right now!

Postblog: Yes, it was hot enough to wear a tanktop at Christmastime. And my daughter took an unauthorized pic of me gazing with fever and dirty hair. But, hey, it’s real.

Recommended reading

• “Fine Thanks, and You?” and 5 More Stupid Things I Say
• Success news from the Rheumatoid Patient Foundation – & how you can help!
• Your Comments Are a Special Blog in Themselves

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Pain is one of the most important symptoms of Rheumatoid Arthritis and many other conditions. Pain is the most obviously significant signal that something is wrong. However, pain is also the most difficult symptom to measure.

Need for a pain scale

Since pain is such an important indicator that something is “wrong,” we ought to find better ways to measure pain and more meaningful ways to relate pain to disease activity. Obviously, pain is mostly invisible. I say mostly because pain can be seen on the face with a furrowed brow or winced eyes, especially in people who strive to be quiet about their pain.

The two challenges to creating a suitable pain scale:

1. Helping people to quantify their pain in a way that is as objective as possible so that it’s meaningful to care-givers (personal and professional).
2. Having a trusted scale that allows care-givers to take patients at their word.

Looking over the inadequate pain scale examples from the NIH Pain Consortium is discouraging; something better is obviously needed.

Meaningfulness of a pain scale

For healthcare professionals, the ultimate challenge is to determine the meaningfulness of pain. The pain scale is only a means to this understanding. A good doctor or nurse needs to know how a patient’s pain is associated with disease activity. The pain scale can only help the provider to discern disease activity as he appreciates what a patient’s pain is like and deduces what the origin of it may be.

“Pain follows the same pattern of development as other parameters of disease activity in groups of patients with RA,” Assessment of Pain in Rheumatic Diseases.

Pain scale relatability

The provider has another difficulty that has nothing to do with a particular patient or pain scale used: His own experience or lack of experience with pain is the only means that he has to relate to pain. His ability to comprehend various levels of pain is helped or hindered by his experiences.

According to Callahan et al, “Pain is a most important indicator of clinical status in rheumatoid arthritis (RA). Inquiry about pain is included in every encounter of RA patients with a health professional; however, the patient’s response to such inquiry is generally regarded as ‘subjective.’”

I’ve seen pain scales on the wall at doctors’ offices, but I’ve never been asked to use a pain scale. Does that mean the doctors I’ve seen haven’t experienced much pain?

The problem of pain tolerance

Another difficulty with measuring pain is that people who live with severe pain such as Rheumatoid Arthritis tend to adapt to it. They increase their tolerance to pain out of necessity. This is the reason that people living with RA often complain that pain scales “don’t work because they don’t go high enough.” RA pain is often starts out as the most severe pain a person has ever experienced, so they might rate it with a high number. But, then, if pain worsens or occurs in numerous joints at a time, they wish for a bigger number. Consequently, they adapt their personal pain threshold and now rate the pain which was previously a “9” as a “7” in order to be sure to fit all of their pain onto the scale. RA patients tend to continually increase their pain tolerance in this way.

Can we make pain scales make sense?

What would be your model pain scale? Please post about it in the comments or on your own blog. Let’s make this our next great blog carnival! Just send me an email at Kelly @ rawarrior.com with the link to your blog post about pain scales and I’ll post them all here in two weeks (December 28th). Let’s see what our imaginations can create! Please put “CARNIVAL” in the subject of your email.

Pain scale articles worth a look:

1. Stanford Pain Visual Numeric scale from 1-10.
2. The Comparative Pain Scale has detailed categories, but this is not specific to rheumatology.
3. MIT’s Technology Review published An Objective Way to Measure Pain complete with brain images.

Further reading on measuring pain

• Does Rheumatoid Arthritis Pain Really Hurt That Much?
• Some Rheumatologists Don’t Understand How Much It Hurts
• Do Rheumatoid Arthritis Patients Have a Low Pain Threshold?
• IOM Pain Report Relieving Pain in America Gets Mixed Reviews
• The Hypochondria of RA Pain: Do I Smell an Elephant?
• “Fine Thanks, and You?” and 5 More Stupid Things I Say

Click here for more blog carnival posts.

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What happens at the American College of Rheumatology Scientific Meeting?

“The ACR/ARHP Annual Scientific Meeting will be held November 4 – 9 in Chicago, IL, and is the must-attend event for anyone involved in research or delivery of rheumatologic care or services. Innovative sessions, ground breaking scientific abstracts, education developed based on practice gaps, the return of popular session formats, as well as hands-on skill training sessions are just some of the highlights,” ACR Annual Scientific Meeting page.

Why are patients interested?

In some ways, patients can be compared to a commodity that is traded at an ACR meeting. Without patients, there would not be rheumatology. Without patients, there would not be expensive pharmaceutical medications. Patients are the reason clinical trials and clinical practice training is needed.

Patients are interested in knowing what is being learned about “rheumatologic care or services.”  They want to know about the innovations and ground breaking science that can address practice and treatment gaps. For patients, those represent changes in the ways that their needs for adequate diagnosis and treatment may be met.

It’s as simple as that.

I will be glad about any information or hope that I can provide to patients from what I learn here.

Recommended reading

• IOM Pain Report Relieving Pain in America Gets Mixed Reviews
• Dear Bridget Duffy from a Rheumatoid Arthritis Patient
• ACR REF Rheum Research & Courage That Won’t Back Down

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In a recent example, I went through three rounds of explanations about why I could not do something. Granted, the other party worked for some large company far away from me. However, they were contacting me because of the work through my blog, so they knew up front I had RA. And if they wanted to, they could easily have learned on this site what that means.

The same old wall

In my fourth blog post ever, I wrote about The Wall. It was an explanation to a friend about why I’d disclose about my RA in a blog. I described the typical reactions to telling someone about RA. There is often this wall of denial that we are sick or disabled at all. There is an almost rude assumption that we are actually better now even when we say we are not.

Let’s try an experiment:

People expect you to take a long walk through gravel and then stand through a meeting. They lead you up long flights of stairs. They don’t offer you their chair. They invite you to a meeting at 0700. They don’t open heavy doors.

Many readers just read that list waiting for a punch line – because they don’t have RA.

However, readers who have RA heard something different: OUCH.

Bluntness is the only solution

Unless you live with someone who has RA or have read this blog frequently (including the comments pages), you have no idea.

A short list to help you out:

• It’s a problem when my care-giver is seated too far away. I need help.
• In airports, I use wheelchairs and assistance for the disabled.
• In restaurants, I look for the easiest thing to cut because at home I eat with fingers more.

3 Things I wasn’t asked, but you need to know

1. RA affects people differently, having flares of various lengths. Mine has lasted almost 6 years.
2. RA treatments don’t work on everyone. I’m part of the lucky “non-responding” 1/3.
3. RA can affect many or few joints. All of mine are affected, including ribs. It hurts to breathe.

Dear Person with RA:

We are different in some ways and the same in others. I’m hoping I’ll have better luck being more specific about how RA is affecting me personally. What would your list be like? Would it help explain your RA?

Dear Person not living with RA:

Please don’t assume you understand how well we are or what our abilities may be. Most of our symptoms, from joint pain to heart trouble, are invisible to you.

Postblog: By the way, that early post about the wall contained the words that became my mission statement. I wrote it off the top of my head, sitting watching my baby play. I’ve since seen it elsewhere, in places I had never visited. If it sounds familiar, you heard it here first.

Have you been through our RA 101?
Clear answers about RA in only seconds!

Recommended reading:

• The Tug of War of RA Awareness: Privacy of Pain & Agony of Disclosure
• Easier Said Than Done: Simple Things That Seem Impossible
• Managing Rheumatoid Arthritis: Transparency and the Wall

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Common threads and similarities in Rheumatoid Arthritis

As Bob West, our geneticist friend has hinted, there may be some different strains of RA. And we know that we are all different genetically, which affects how our bodies respond to treatments. But even with the diagnosis limitations that we have today, we who live with the disease find common threads.

What is today called Rheumatoid Arthritis is recognizable to us. In a public place, we notice RA in total strangers who don’t look sick because we recognize tell-tale signs. We meet a new friend who has RA and it is like we have found a long lost sister and talk for hours. (I’m so thankful for my #rheum mates it’s hard to put into words…)

I’d like to point out that there are many aspects of this Rheumatoid disease that we who interact in community understand to be common to the disease which are not reflected in academic literature. For example, we hear many had first symptoms in their feet, but hands are always stated to be the main point. Hand joints are given preference in diagnosis. Mystifying. That’s one of the reasons I built this site. And it’s the reason I’ve been so adamant that the patients’ voices must be heard.

Things that are said in our community fit nicely with the little that has been written about RA that comes directly from actual patients. We never read those books before RA diagnosis, yet the similar experiences are uncanny.

Two examples of common RA experiences in literature:

1. From Out of Joint by Mary Felstiner: “In one decade I’ve lost my guarantee of good health, lost fluidity, lost ease in the physical acts of parenting, lost a fair practice of equal tasks, lost nouns like energy and swiftness, lost my lifelong singing voice and even a speaking voice free of crackles and pops, lost my elbow grease for vacuuming and yard work and tearing full speed down a swimming lane, lost any assurance I could run from threats, lost my trust in in feminist to name my woes, lost my reliance on medicine and also in alternatives, lost my remission, lost my pregnancy. Amid all the losses what can never be found again is my old sense that each loss must be a fluke,” page 37.
2. From a PhD nursing thesis by Dianne Roy, The Everyday Always-Thereness of Living with Rheumatoid Arthritis: “They are accepting the thrownness of their situations and living with the balance of what is possible today and what is not possible. The strength in dread is in accentuating the positive possibilities of now, of appreciating what can be done and not dwelling in those things that cannot be done,” page 174.

I’ve seen it happen a thousand times on this blog. Or someone sends me a letter asking how I know their life so well. The answer is that I’ve lived it.

Have you ever had one of those experiences? What are the things that make us similar? I’ll start the list and you can finish it.

1. Making continual adjustments to deal with disability or pain.
2. Hiding the severity of pain that would make others faint.
3. Having family members or neighbors or employers who don’t think we’re very sick because our disease was misnamed.
4. Having a heroic optimism that might make Pollyanna look cranky.
5. Being told by a doctor that our disease pattern is not typical or that we look ok.
6. Swelling without pain or vice versa.
7. Having to take medication that scares us.
8.  

Recommended reading

• RA Reality Versus “The Lie”
• Fighting Rheumatoid Arthritis Depression
• How Rheumatoid Arthritis Pain Affects Women’s Lives

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