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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It’s crunch time. No one can decide but me.

About a year ago I hit the end of the line with my rheumatology care. Dr. Smart, who we greatly appreciated had stopped my Actemra and told me to wait for a new drug to be approved. I was to stay on methotrexate “in case it helps somehow” and wait. I’d begun to investigate clinical trials to see whether I might be able to get another treatment that way, but Dr. Smart warned that trials would not accept my almost always “normal” CRP. The more I learned from research and other patients, the more I wanted to get a nuclear bone scan added to my chart – some evidence of inflammation to offset the normal CRP.

I didn’t want to accept that nothing else could be tried to try to stop the rheum monster. It’s hard to accept every day just a little bit worse year in and year out. I can stay positive mentally, but what good does that do my body as the slide continues? And damage of some kind continues unchecked.

Last summer I found a way to try Rituxan! I found a clinical trial for a faster administration of Rituxan, already approved to treat RA. That meant that CRP would not be required – no RA examinations are required at all – only a negative pregnancy test. And THAT I can readily produce.

Speaking of peeing in a cup… within a couple weeks of my first round of Rituxan last September, my Dr. Good GP ran a urine culture with a bunch of blood tests in a regular physical (one reason I call him good). It showed two types of infection. And by the time Nancy and I got back from Philadelphia and the nurse reached me, I’d developed symptoms.

In clinical trial lingo “serious adverse event” equals “really bad.”

Since then, I’ve been through several rounds of antibiotics without success. Eventually, Dr. GP suggested hospitalization for IV antibiotics. The clinical trial nurse responded when I mentioned hospitalization for an IV antibiotic: “THAT would be a serious adverse event for us.” This week, I was ready to choose the hospital anyway. Since October, I’d failed test after test, even after antibiotics. Finally, yesterday, I had my first clear culture. So I’m finally infection-free.

(Aside: if you’re reading and you don’t have RA or it hasn’t gotten to your hands yet, it’s REALLY hard to pee in a cup. It’s more like peeing all over your hand and hoping enough gets into the cup for the lab.)

Meanwhile, whenever I’ve mentioned the six-month infection, with bladder pain and fevers, no one seemed very worried. Do lots of people have infections that last months and it’s no big deal? I just never did before, so I didn’t know. The idea of an infection with an immune-system disease and the Rituxan kind of worried me a bit. I took every precaution I knew of – taking only one five-minute tub bath in the past six months, drinking extra fluids, taking cranberry capsules…

Maybe you are guessing what’s next: my decision. The Rheumatoid disease has been indifferent to the Rituxan. My joints are just as bad and my fever is persistent. So it was inevitable that I’d begin to think about what’s next. My thoughts:

Do I take the second round of Rituxan this week, completing the whole year, risking the long-term infection? Along with the other risks of the infusion? Even though it would postpone my ability to try another treatment if one is approved?

I posed this question to two doctors, Dr. GP and Dr. Tylenol –the rheumatologist we met with last month trying to find a replacement for Dr. Smart. (I am not treated by a rheumatologist in the clinical trial. There are no exams or prescriptions given – only the pregnancy test and Rituxan.) Both doctors gave the same answer.

They both said that I should take the 2nd round of Rituxan, completing the year of treatment even though the drug does not help me, because clinical trials are important to research. I was even told that I should think about what is best for humanity since I “usually want to help others.”

Yes, I do – want to help others. Excuse my being frying-pan blunt, but how could I continue to help others if I succumb to infection? FINALLY, does no one recognize that this unrestrained Rheumatoid disease makes me more disabled all the time? That I continue to do less and need more help as my health is slowly eroded away? I am not sure what percentage of people respond to Rituxan after this long, but that will be how I decide today.

Recommended reading

• The Beginning of an RA Clinical Trial Journey
• Living with (RA) Rheum Disease Is Already Multitasking
• Using CRP in Criteria for Rheumatoid Arthritis Clinical Trials
• Keeper or Loser: I’m Not Giving Up, But What Do You Think?

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Why patients wonder about not treating Rheumatoid Arthritis

Since I live with RA myself, I know the validity of this question; it should not be brushed off. Living with the trouble, expense, and side effects of treatments is a burden on people. Personally, I have reached the point a few times when I say, “I only want out. I can’t see another doctor or swallow another pill. Ever.” I’m tempted by the thought that I can just reject all labels and treatments and will myself well again. There are people selling books who promise it worked for them. Why not?

Because Rheumatoid Arthritis is not a phantom of our making; it is a real monster that is attacking our bodies. We can’t rescue ourselves any more than Leia could from the hands of Darth Vader. Okay men – compare it to a young Marine in enemy hands. Our battle is real. We need real weapons.

What’s the goal of treating Rheumatoid Arthritis?

Without treatment, we know what Rheumatoid Arthritis can do.

1. Joint destruction: RA attacks bone, cartilage, and soft tissue causing joints to weaken and deform to varying degrees.
2. Disability: joint destruction and systemic effects of RA lead to inability to perform tasks.
3. Systemic inflammation: RA disease leads to earlier death, often because of its effect on the heart or other organs.

No one can assure you what will happen with RA since disease progression varies, possibly due to genetics. But the goal of treating RA is the same for everyone: to interfere with the disease process. Slow progression, delay disability, and extend life.

How much will treating my Rheumatoid Arthritis help?

It’s also true that we need better weapons. We must acknowledge that patients ask such questions because the weapons we have for Rheumatoid Arthritis treatment are not highly effective in a majority of patients. Success in a clinical trial is 20% improvement, and about 29% of patients reach only this level of improvement. Another one-third are “non-responders.” Only about 20% of people receive 70% improvement. And sooner or later, treatments lose effectiveness.

Remember Luke Skywalker took out the Death Star with one shot from his X-wing. Rheumatoid Arthritis treatments have the same goal: to use a molecule to take sharp aim at the offending immune signal. Today’s treatments work better in some patients than others, so of course the goal of research is to find treatments that work on all RA, stopping symptoms and disease progression.

Next time in part 2, I’ll respond to a similar frequently asked question: “What if the treatment is worse than the disease?”

Recommended reading

• New Way to Report Response in RA Clinical Trials?
• Video: Rheumatoid Patient Foundation Gives RA Patients a Voice
• Tofacitinib / CP-690550 aka Tasocitinib Succeeds in Pfizer’s 2nd Phase 3 Trial

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Being alone is not all bad, but feeling cut-off sucks

Being alone can be pleasurable, too. Like walking on the beach or driving with the windows down on a beautiful day.

When we were teenagers my brother used to ask me “Whaddya mean we? You got a mouse in your pocket?” The best translation is probably: bug off.  But somehow the insinuation of my being alone except for an imaginary rodent was a pretty successful insult. Who wants to feel cut-off, especially as a teenager? He must have known how well it worked since I heard it often.

Yes, Virginia, there’s a mouse in my pocket! Here’s why…

Since I need help, I don’t travel alone; either Katie Beth or a friend accompanies me.  In September, I was fortunate that my dear friend Nancy traveled with me to the E-Patient Connections conference in Philadelphia. I had first met Nancy in a comment on my blog about two years ago! Her words reached out to me and I felt validated and connected. I hoped I’d one day meet her, having no idea we only live two hours apart. Meeting friends like Nancy is obviously one of the best things that has happened to me because of RA.

But, another one is actually the mouse Nancy gave me!

Nancy gave me this soft little mouse a few months ago. When I got into the clinical trial we laughed about feeling like lab rats. She probably just wanted to give me a cute reminder that I’m loved, but she had no idea how effective it would be.

One year ago, I reached the end of options with my rheumatologist, being told to “wait for something new to be approved.” I considered trying Rituxan, but the doctor didn’t prescribe it any more. If you were reading the blog, you know I was hoping to get into a clinical trial. Pretty desperate for options, my friend Jamie gave me stern advice, “Make your doctor understand how RA has affected your life. Take me and your RA family into the office with you. Speak to the doctor as if you are speaking to me.”

Jamie had hit on the most essential side effect of this blog: Knowing we’re not alone.

I’m not alone. And you’re not alone either.

It’s different with a mouse in my pocket. I know I’m not the only one with my symptoms, side effects, questions, or fears. Whether I’m on a stage with big lights and cameras in my face or getting an IV of Rituxan faster as an experiment, I’m not alone.  Spending too much time waiting at pharmacies and labs, I’m not alone.

The mouse can’t quite fit in my pocket, so she rides in my worn briefcase. She has a special place in my professional patient rolling briefcase alongside my laptop, meds, snacks for meds, neck brace, socks, business cards, and pillow. She reminds me I’m not alone.

Recommended reading

• Accomplishing Thankfulness via Thorough Commitment
• You’re Not Lost and Michael Bublé Video
• Having a Cuppa Together: a Rheumatoid Arthritis Meme
• Do You Love a Rheumatoid Arthritis Patient?

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by Eveira Prados

What a shame I felt and I still feel,
When the contemplation of quitting invaded my mind.
Thoughts that keep telling me,
“What a mess!”
“Is this real?”
“How am I going to survive?”

I took the liberty to write to you this humble letter,
My dear friend Renoir
To tell you my story,
And talk about your art.

One grey day,
While appreciating the beauty of your amazing art,
During one enlightened moment,
Right there and then,
Astonished I realized,
My dear friend Renoir;
That you, the master of artists,
Great virtuoso from the start,
Like me suffered from the same illness,
But in your case unfortunately,
It turned really bad.

Upon that educational second,
My dear friend Renoir.
I promised myself, to make time for me and my tiny world.
I promise I will draw,
I promise I will teach,
I promise I will write,
I promise I will play with my girls.
I promise that RA will not take the best of me,
It will not take my time and determination.
I WILL enjoy what I love and prioritize nothing else!

Recommended reading

• Renoir’s Rheumatoid Arthritis
• The Isolation of RA Pain: Short Poem Video
• The Next Three Days: a Movie Review with a Twist
• A Summer Read for Rheumatoid Arthritis Warriors!

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What would improve diagnosis of RA or other autoimmune arthritis?

This was a really tough topic. So kudos to the participants of this 2nd Rheumatology Blog Carnival! Last week, I asked folks to come up with suggestions of ways to improve diagnosis of autoimmune arthritis diseases. We realize that none of us has the single answer. However, when we add the knowledge we’ve gained to our combined experiences and passion, we may shed new light on this important topic.

Rheumatology Diagnosis Carnival

Julie of An Attitude of Gratitude wrote Thoughts for Improving the Time it Takes to Diagnose Rheumatoid Arthritis. Julie appeals to medical professionals to

• Listen to patients with suggestions of how it can be accomplished in a busy practice.
• Use the anti-CCP over the Rheumatoid factor.
• Realize most patients aren’t drug seeking, but often suffer silently.
• Educate themselves if they are in general practice.

That’s not all: Julie has a similar list for patients. It’s no nonsense advice for every patient to take charge of his health.

Tanya of RA New Life wrote Improving Early Diagnosis in Autoimmune Arthritis. Tanya is a nurse who says, “I woke up one morning disabled.” Like many patients, she looks back to put together the pieces that could have been clues for an earlier diagnosis. Even though she sought medical attention for symptoms that she now recognizes as Rheumatoid Arthritis, she was not diagnosed because her Rheumatoid factor was not elevated. Tanya is so matter of fact – I can just see her doing the things she says she did to avoid being thought of as weak. I wish every doctor could read this short true depiction of someone being diagnosed with RA.   

Lauren of Unguided Missile wrote Autoimmune Ignorance, Part 5. The “part 5” should clue you in: Lauren means business. Considering both her own experience of being diagnosed with Psoriatic Arthritis and that of her husband, who has Ankylosing Spondylitis, she explains that education is the most important thing needed to improve autoimmune arthritis diagnosis. Doctors dismissed their symptoms because of inadequate knowledge of the diagnoses they now have. Autoimmune arthritis seems like it’s the least recognized of the autoimmune diseases.

Barbara of This Luscious RA wrote Missing My Body’s Signals. Looking back for clues before diagnosis, Barbara recalls subtle signs of low level inflammation and a constant low level fatigue that she excused for other reasons. What sign led Barbara to realize those early signs were likely Rheumatoid Arthritis? During these last couple of months, those symptoms have resolved with treatment. The contrast of feeling well crystallized her thinking. She appeals to patients not to accept feeling unhealthy without a logical explanation. Her “new crusade” is to help people to realize when they need help.

Carol of My Life as a Traveling Southern Girl wrote RA Diagnosis: Round Pegs in Square Holes. Carol is a southern girl with a sense of humor a love for snow! She also works in the healthcare field and has a logical take on diagnosis. She has practical advice for patients who present as round pegs that don’t fit notions of diagnosis (square holes):

• Document your symptoms.
• Keep asking your doctor.
• Be a pushy patient.
• Get a second opinion.

Jodi of Aim for Perfection Editing wrote Edited by RA. Jodi is a professional writer and editor who has an inviting way with words. She plainly states what patients need from doctors in order to make the diagnosis process easier. “I think doctors need to educate themselves—not by reading textbooks but by listening to their patients—and stop looking at numbers and statistics to define debility.” You’ll also love Jodi’s new doctor. This is a  “wonderful rheumatologist who listens to my concerns, who cares about reducing the limitations RA imposes on my life…” That is all patients can ask for.

Jen of The RA Vegan wrote Talking about RA: Reducing the Time to Diagnosis. Jen makes the case for patients with normal blood tests like her. When her symptoms said RA, but her blood tests didn’t, a good doctor admitted “I don’t know,” and sent her to a specialist. Often that is the key job of primary care doctors so she makes an excellent point. Jen is also glad for doctors who accept her choice to eat vegan and has hope that we are “…moving towards a time when we can try to help people feel better and get better by looking at the whole person.”

Do you see any common diagnosis themes?

Some themes stood out to me such as better education about the diseases themselves, finding doctors who listen to their patients, and persistence on the part of patients. Personally, it seems a lot of patients who thought of themselves as “atypical” during diagnosis seem pretty typical to me when the common threads in their diagnosis stories are examined. Perhaps typical should be re-defined.

I want to thank the contributors for participating in this tough topic. Please email me if you’d like to be added to the list to be notified next time we plan a carnival.

Note: Mayo Clinic has been involved in a huge research project that’s leading to new findings. Recently they published a chart summarizing the percent of people likely to be diagnosed with several types of autoimmune arthritis during a lifetime.

Recommended reading:

• The page on RA Warrior for folks looking for diagnosis: Do I Have Rheumatoid Arthritis?
• Enjoy the 1^st carnival too! It’s good stuff! Rheumatology Blog Carnival #1: Causes of Rheum Un-Awareness
• A few suggestions I had for docs on how to improve diagnosis: How Can Autoimmune Arthritis Diagnosis Be Improved?

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For me, a Rheumatoid Arthritis diagnosis was a very long process. From the teen years on, sudden painful flares attacked my hands, feet, hips, and shoulders – only I had no idea they were called flares.

The whole process seemed rather comical, like a scene from a Dick Van Dyke episode: healthy girl falls down as hip goes out from under. There would be raised eyebrows as I limped for a few days, and then I’d feel fine. I was tired a lot, but I was a busy mom with thyroid disease, so that was easy to ignore.

The flares in the shoulders and feet were more painful. But they were considered no more serious to doctors or others to whom I confided. As a matter of fact, the worse the flares, the less I confessed. It can feel humiliating to have doctors accuse you exaggerating. A normal sed rate assured the doctors that my problem was psychological.

Finally, a Rheumatoid Arthritis diagnosis

About four years ago, that all changed. One joint after another flared, but it did not get better. The joints fell like dominoes until every one of them had fallen. There was also the fever, the weight loss, the flushing and rashes. The mystery for me is now solved: somehow, the birth of my last child triggered a case of Palindromic Rheumatism or mild Rheumatoid Arthritis to become “full blown” severe RA.

The years of my mystifying complaints of painful flares with no diagnosis taught people around me to ignore my mysterious illness. However, the flare that came over four years ago and never subsided forced me to solve this mystery. Several humiliating doctor visits later, my mystery was solved with a Rheumatoid Arthritis diagnosis.

I had no idea what that meant or what to do next. Into the trash went piles of printouts from the internet – my research trying to solve the mystery of my non-RA that turned out to be RA. Being a newly diagnosed Rheumatoid Arthritis patient was a whole new mystery.

Newly diagnosed with Rheumatoid Arthritis Mall Map

For the last few weeks, in between blog posts and homeschooling, I’ve worked on this project. You can have a look at the New RA Map here. I know nothing can make an RA diagnosis easy, but I hope this helps someone erase some of the mystery. One more section will be added soon, but I’m happy with the way it turned out.

Postblog: Have a blessed Easter.  

Recommended reading:

• Do I Have RA: Rheumatoid Arthritis Diagnosis
• Can I Delay Treatment for Rheumatoid Arthritis, part 1 (a thyroid story)
• Blood Tests for Rheumatoid Arthritis, part 2

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Answering emails and messages is an enjoyable part of my day because I love hearing more of your voices and stories. Every day, I meet fascinating, compassionate, and buoyant warriors who melt my heart. And I often cry with the newly diagnosed with RA.

Of course, I can never write everything I want to say because there is never enough time. That’s actually why I started the website. I thought that it might save some time if I could write out a post and then be able to just give someone a link. Are you laughing out loud at this point? If you know me very well and how much time I spend working on the site, you are rolling on the floor – or at least rolling your eyes.

A list of newly diagnosed Rheumatoid Arthritis questions

Here’s my idea: a Newly Diagnosed RA page can help those don’t know what to ask or do or read first. I hope it can be like the You Are Here map when you walk into a new mall. Only much less fun.

This week, I’m working on my newly diagnosed page. What questions would you ask if you were newly diagnosed? What do you wish someone told you? I will use your comments as I finalize the page.

Are you newly diagnosed with Rheumatoid Arthritis?

If you are newly diagnosed with RA yourself, you might want to look over the RA 101: Basic Rheumatoid Arthritis Information pages that answer some basic RA questions from a patient’s viewpoint. Another good place to start is the Methotrexate and Rheumatoid Arthritis pages since this is the most prescribed RA treatment. If you are looking for a friend with RA, you might want to try our friendly RA Facebook group. If you want to read more, you can find every post in the category “Newly Diagnosed” here with this link.

Being diagnosed with Rheumatoid Arthritis is hard. There’s no real RA easy button, but two things that will help you most are information and companionship. My advice: Keep asking questions. Try not to become isolated: connect with others who understand what you are enduring. Take it one day at a time.

Recommended reading:

• Where Is the RA Help Button?
• What Is it Like to Have Rheumatoid Arthritis? Part 2: Why Don’t They Tell You?
• The Me Before Rheumatoid Arthritis

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What, There’s No Easy Button?

Once a blogger I know mentioned how easy it would be to write a Rheumatoid Arthritis help blog. “Just write the tips you learned that make it easy to live with RA.” I just said, “Thanks.”

 Of course, he did not realize that living with RA is difficult. And that there is not something we can do to make it easy. It’s too exasperating to explain sometimes. That’s why RA’ers are so grateful to find one another – it’s like finding a friend who already knows you.

Rheumatoid Arthritis help wanted

Sometimes we joke about being a professional patient because managing RA is like a part time job. It gets a little easier after a few years when you get used to it. Here are 20 tips I’ve found that I need to know about the management of Rheumatoid Arthritis. I can promise you it won’t make it easy.

There’s something else that’s really important – trying to find a good doctor. Here are 21 things you need to know. But it might not make finding a good RA specialist easy.

Of course, you’ll want to get a peek at all your doctors’ notes before you pass them on to the new RA specialist. It’s best you find out what is in there before the new doctor does. Sometimes, there is surprising news: one friend of mine found some bizarre facts about herself that she would never have known. She’d never heard that she had five children!

When the big day comes, you’ll want to be prepared to meet the new Rheumatoid Arthritis specialist. There are 11 things you might want to bring with you.

When you have RA, help is everywhere

For those who live with RA, help is everywhere. Use the word Rheumatoid Arthritis a couple of times in an email or a Google search, and the ads will begin to pop up like crabgrass with all kinds of tips to live easy with RA. Here’s the dish on which tips in the Arthritis Foundation book are good and which are less… easy.

Speaking of easy RA help, good luck finding the RA diet cure. It’s not here on my Rheumatoid Arthritis diet tips post! That’s for sure.

Life is hard enough with RA. Help for RA sleep problems would be nice. There are so many great suggestions from readers on that RA sleep series; you might fall asleep reading them.

And it will be good that you got some rest.  Then, maybe you’ll begin one of those many hard projects which have been piling up due to RA. I have a couple of ideas about how to get started…

Recommended reading:

• E-patients’ Role: Do Doctors Hate Blogs?
• Ultrasounds for Rheumatoid Arthritis, Part 1 
• Five Ways to Spread Rheumatoid Arthritis Awareness

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11 Things you might bring with you to the new Rheumatoid specialist:

1. Person: Bring someone to serve as a witness who also provides moral support. Choose someone who believes in you and will back you up one hundred percent. For example, choose someone who has seen your disease at its worst. Discuss in advance the role they should play. Do you want them to have the freedom to interrupt?
2. Questions: Some doctors are willing to look at a list of questions. Others prefer you only ask questions verbally. Regardless, carefully prepare your most important questions in writing so that you won’t forget what to ask.
3. Records: Bring all relevant medical records or lab results. It takes time to prepare and maintain your own set of records, but it is worth it for several reasons: You have them whenever you need them.  You can know exactly what is in them, even having errors corrected. You can use them to make certain that every lead is followed. If this is a first visit, bring a folder with copies of relevant labs and doctor notes to hand over to the office to be added to your new chart.
4. Information: This one is the stickiest. Not because the toddler got PB&J on your folder…  Surveys show that doctors are much less likely to use the internet than patients are. I’ve seen this firsthand. One doctor told me that she barely can email. Another laughed in my face at the mention of the internet. The radical website I mentioned? National Rheumatoid Arthritis Society (NRAS). Choose carefully what information to hand a doctor. Choose things like professional journal abstracts or articles on reputable websites like Johns Hopkins or Cleveland Clinic or a mainstream news source. Don’t expect him to respect information from a forum discussion whether or not it’s correct.
5. Notepad & pen: Bring something comfortable to write down what you might want to remember. There might be a question to ask the doctor when you get a chance. There could be something to look up online when you get home. Maybe there will be instructions about how a prescription should be administered.
6. Meekness: Doctors are notorious for being defensive with patients who try to be involved in their own treatment plan. Hopefully, you’ll find one who is humble enough to have a productive conversation. Either way, you can do as much as possible to be respectful of her knowledge and the many years of training it took to become a Rheumatoid Arthritis / rheumatoid specialist. It’s easier to be nice if you realize that the last patient may have handed the doc a spam sandwich full of crazy ideas printed from the internet.
7. Moxy: Being polite does not mean being a doormat. The reason for the appointment is your own health, not anyone’s ego.  It is vital to your health that you learn to clearly advocate what you need. Only you can inform the doctor of things that only you know such as how much pain you feel or whether a medicine is bringing you relief. If you have any concern, you should be able to discuss it. If you are told there is not time, politely ask for the time to have it addressed through another appointment or a short phone call.
8. Symptom / pain diary: If you keep any kind of symptom journal or calendar, bring a copy for the doctor to see. Make sure that any symbols or abbreviations are clearly explained. Ask that it be added to your chart.
9. Open mind: Hopefully, you have chosen a good specialist who can offer you expert advice. Listen carefully to ideas that are new. You don’t have to accept them, but you should at least examine them.
10. Sweater:  In the USA, I have not been in a doctor’s office which is not at least 10 degrees Fahrenheit colder than the freezer section of the grocery store. If you wear layers, you can be comfortable with whatever the temperature is. This eliminates either sweating or shivering which can make you look and feel more nervous. I bring socks if I know that I will be made to disrobe.
11. Rolodex: Just kidding. But always keep in mind that you can use this when you get home. It may relieve some pressure to keep in mind that if this doctor does not listen or does not know the answer you need, you can try again. Yes, it’s exhausting and demoralizing to have to start over with another rheumatoid specialist, but you should have another chance if you need it.

Recommended posts:

• Medical Records Tip for Your Rheumatoid Arthritis History: Read the Doctors’ notes
• 20 Tips for Managing Your Rheumatoid Arthritis Treatment
• 20 Questions RA Patients Should Ask a Doctor
• 10 Dumb Questions About an MRI for Rheumatoid Arthritis
• E-patients’ role in Healthcare Social Media: Do Doctors Hate Blogs?

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