There are countless ways Granmary is inseparable from me or my life or this blog even although she did not have RA and never read a blog. When I was a young adult, she taught me about cooking, sewing clothes, gardening, and how to paint windows. And other really important things like how to hold a fussy baby, and how to properly visit the sick. She always sent homemade food, extra ice cream, gourmet juice – and breakfast!

You know that “old me” that I miss so much? Granmary was a big part of her.

Granmary could turn any visit into a party. And find the bright side to any situation. She shined the spotlight on others. She thought of every detail; and liked to make things look easy even if she put in a tremendous amount of work to pull them off.

A million memories fill my mind. Lunches at Friendly’s when my girls were babies. Hours on the front porch rocking. Watching Redskins’ games. Shopping for our baby crib. Oyster stew for an impromptu Anti Horse Thief Supper at New Year’s (scroll down to March 20, 1902).

There is joy in seeing my own kids do things I taught them which I learned from Granmary. We’ll carry on doing what she taught us. And what she did, but didn’t talk much about, like helping other patients to fight their battles. We’ll cook her recipes. We’ll send ice cream. Some of us will even learn to like oysters.

Important program note: Last week, I did an interview with Dr. Borenstein, prior president of the American College of Rheumatology for his first broadcast of a new online radio program called Speaking of Health with Dr. B. to be broadcast on Women’s Radio – click this link to listen. My interview was 30 minutes, and I haven’t heard the edited version yet, but there could be another person interviewed before you hear me. I’m told that the program will be the top show on their site tomorrow (Friday) and for the next couple of days. After that, it can be found by searching “Speaking of Health with Dr. B.” If I learn any more, I’ll let you know.

Recommended reading

• Perception, Reputation, & Information: How Do We Decide about Dangerous Drugs?
• The Me Before Rheumatoid Arthritis
• Can We Treat the Whole Person or at Least the Whole Disease?
• Three Fortune Cookies: What We Hope the Future Holds

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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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If you’ve been reading my blog long, you know I talk about hope as a verb – something you do. Hope is not something that some lucky people just have. When you’re actively hoping, you’re probably doing as much as you can too – even if it’s “only” praying.

Hope typically leads to action.

Actually, I’m really hoping this nausea will go away. That’s why I just got up and took another Pepto-Bismol.

1) Just like many of you: fighting & hoping to get as much of my life back as possible

Hoping I can find a treatment that will slow down my Rheumatoid disease, I’ve tried every type of treatment I could. I got into a clinical trial as a way to try rituximab when every other door was shut. I’m hoping really hard that Rituxan will be the one that works on me. Like I said, hope can be hard work sometimes.

2) Together with many of you: fighting & hoping to improve all our lives

There is another thing I’ve hoped hard about this year: improving the lives of people with Rheumatoid disease. The thousands of patients who write comments and letters drive me forward every day. You may know I worked with other patients throughout 2010 to establish the Rheumatoid Patient Foundation. In our first year, 2011, we’ve accomplished huge steps toward our mission. While we’re growing quickly, our foundation has already accomplished so much! We should celebrate! Here’s a partial list:

• Assembled an impressive and motivated Advisory Board
• Organized volunteers who help accomplish our goals
• Printed & distributed literature presenting the patient viewpoint in a professional format
• Published a ground-breaking video The Faces of Rheumatoid Disease
• Exhibited at the American College of Rheumatology Scientific Meeting
• Been approved for grants for projects which fulfill our mission
• Established working relationships with numerous professionals and organizations
• Created a website with valuable information for patients and care-givers
• Launched RPF social media profiles to increase awareness

Seeing how much we can accomplish, it’s not hard to imagine that we can do even more in the next year! There are so many things that can be done to improve things for people living with Rheumatoid disease! The Board of Directors of the RPF has set some exciting plans in motion to make many of the ideas patients have discussed on this site for the last couple of years become a reality! Doctors and patients have asked us for resources and tools for patient care, research collaboration, and disease awareness. The needs are so great and we, as patients ourselves, are the ones who can best meet them – and we are! Please join us now in doing all we can to help the RPF help patients!

Here’s how you can help the RPF help RAD patients right now:

1. Make a donation to the RPF – click here. Ask others to send end-of-year donations too.
2. Watch the new RPF Faces of Rheumatoid Disease video – click here. Don’t forget to LIKE it on YouTube and share it!
3. Click here to get new RPF posts emailed to you or subscribe to the feed of the RPF blog called RAD Events on the RPF website to keep up to speed.
4. Join our new RPF Facebook page – click here and share with friends.

Recommended reading:

• Hope Is Like Rheumatoid Arthritis Therapy in a Spray Can
• Is there a cure for Rheumatoid Arthritis?
• Mayo Clinic Video Interview: Patients at ACR Scientific Meeting

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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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Pollyanna gets a bad rap

It’s stunning to me how some things are construed as opposite of what they are. Somehow Pollyanna has become synonymous with sounding dismissive and detached. We all know people who dismiss serious problems that have no easy answer. “Don’t worry, it’ll work itself out” or “I know you’ll find a way.” That’s nothing like the Pollyanna I know and love.

Who says Pollyanna was a stranger to adversity who glossed over problems with trite remarks?

Pollyanna gave attentive, perceptive responses to others’ dilemmas because her father taught her the glad game to cope with the misfortunes that plagued her: she lost her mother at an early age and lived in poverty without toys, siblings, or playmates. When her Christmas gifts consisted of cast-off items deposited into a missionary barrel such a pair of crutches, Pollyanna’s daddy taught her to earnestly look for something to be thankful for. Even with crutches for Christmas, her wise father pointed out how glad they could be that she didn’t need them.

If you’ve read the book, you know that Pollyanna soon loses her only advantage in life – her wonderful father. Coping with the loss and honoring his life, she pursues thanksgiving at every inconvenient opportunity. She determines to prove that silver linings are the rule and not the exception.

Gratefulness is always good, but inconvenient thankfulness is a higher calling

What’s inspiring about practicing thankfulness when circumstances are favorable? Not so much.

The more dedicated you are to it, the more meaningful gratitude is.

We can almost always find something to be thankful for – and we should. But when we have to search for it, it’s even sweeter – and more inspiring.

Easy to be thankful for right now

• Friends who stand by me
• A GP who is attentive to infections
• My kids’ health

Silver linings (The Glad Game)

• Seeing  my kids are compassionate people aware of others’ needs because of my illness
• Getting to travel to exciting places just because of RA
• Having a unique vantage point to do RA research and help others

What’s on your lists?

Recommended reading

• Be Your Own Counselor with Rheumatoid Arthritis
• You’re Not Lost and Michael Bublé Video
• All I Want for Christmas Is My CRP
• RA Reality Versus “The Lie”

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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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I want to run on the beach, but I stumble running to the bathroom. I want to hold a tennis racquet, but most days can’t hold a TV remote properly. Want to paint my faded front door, but I haven’t been able to paint my nails in 5 years.

Not whining. Not asking for pity. I’m working through this. One more time.

Isn’t it weird that one day you can lift a 50 lb bag of concrete and the next day, you can’t pick up a cup of coffee? I have yet to read an explanation for this. I’ve asked a couple of researchers who said, “Swelling?” Really?

I remember asking my first rheumatologist if I would lose muscle tone. I didn’t ask because I’d read about cachexia. I hadn’t read much of anything at that point. It just made sense to me that if you don’t use muscles, they will atrophy. After a long life of weight lifting and pushups, I didn’t want to lose anything. I remember it like it was this morning because I was so unconvinced when Dr. KBC insisted that it was not a concern.

It’s a distressing change. Is that an understatement?

For as long as I can remember, I’ve woken up every morning thinking about what I want to do that day. Sometimes, it’s very early and I don’t quite remember about the RA. I awaken thinking of things I want to do. Of course the delusion doesn’t last long thanks to pain. It’s usually over an hour before I can get up.

At that point, I tell my soul to be still and accept whatever God makes me able to do that day. I ask Him to help me to be glad with whatever comes. I’ve said that for 26 years.

I am determined to fight to get as much of my life back as possible.

Swinging therapy. Every day Roo stays for an hour on the swing set whether he’s frustrated or happy. This morning, the sky was grey and the wind was brisk and cool. How rare for June in Florida. I went out with Roo to sit on a swing.

Never was a person more happily uncomfortable. It was the happiest moment I’ve had in months. Whatever we have to do each day, may we find a moment like that.

Recommend reading

• Rheumatoid Arthritis Muscle Wasting: Rheumatoid Cachexia
• Hope Is Like Rheumatoid Arthritis Therapy in a Spray Can
• Rheumatoid Arthritis Tips Book Review
• Love of Challenge & the Rheumatoid Arthritis Speed Limit

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We’ve just added eight more stories to our RA onset story pages. Even with all of the stories and emails that I’ve read from people with RA, several hundred I’m sure, these new ones affected me. I laughed, cried, nodded knowingly, and was even surprised a few times by something new.

Some common themes in the stories:

• Years without knowing what’s wrong.
• Waking up with something new hurting every day.
• Not mentioning how bad it hurts because no one understands.
• Surprised to be so suddenly disabled after being so strong and healthy.
• Family members with RA.
• Medications working differently in each person or not working at all.
• Days or months passing by and not being able to move.
• Compassion for others who are suffering.
• Being determined to overcome the pain, to live your life.

Each RA onset story helps

Every story has its uniqueness. I even read for the first time about an onset of RA that is exactly like what is described in textbooks. However, together the stories also provide a clearer picture of RA. I am convinced that our own voices, telling our own stories is the only way that the reality of RA can be known. When the depiction of RA onset is more accurate, then diagnosis will be easier to obtain.

Recommended reading

• Predictors of Pain in DAS28 Remission
• Winter Solstice Lunar Eclipse: Was the Moon Really Red?
• Should Chronic Pain Patients Be Treated in the ER?

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Last night we watched the movie The Next Three Days starring Russell Crowe (John) & Elizabeth Banks (Lara) about a professional woman with diabetes who is accused of murder.  Lara loses every appeal and her husband John becomes desperate while watching his wife and their young son Luke struggle to cope.

I was glad my son Bear picked this film since I love mysteries and stories of overcoming injustice. I don’t know how many times I’ve watched The Fugitive, The Pelican Brief, and The Firm.

We all kind of moaned at how long the story’s downward spiral lasted. “Let’s see some action,” said Tiger. Why ARE they taking so long? I wondered, too.

It was a little like a malfunctioning toilet on continual flush. Movement is downward. Things get steadily worse. Some of you read my mind the same way you read my blog and you know I had to compare that to my experience with RA. It mixed in my mind.

John ultimately sees that no one believes in Lara’s innocence but him. No one believes because I don’t look sick. He has no hope with the legal system. Do I have hope with medicine? When his lawyer doubted too, I said aloud, “Hey, there is something just as bad as when a doctor doesn’t believe – having your lawyer think you’re guilty.”

Refusing to let his son’s life be destroyed, John plans an escape for his family into another country. From that point on, he’s dealing with criminals and trying to evade the police. So we got plenty of the action we’d been begging for.

A lack of evidence

There was so much loss – from comfort and order in beautiful Lara’s life to living as a convicted murderer. The toll it took on each one them was visible. But John’s solution was so drastic and dangerous and violent, it was unnerving. I know this is how many feel about partially shutting down our immune systems as we attempt to free ourselves of this disease.

But thanks to the long first hour, we saw he had no choice.

Lately, I’ve been thinking about that toilet. I feel like I’ve watched abilities and plans swirl downward continually the last couple of years. RA has taken so much.

I am pushing the toilet picture out of my mind. Yes, I want to use my tennis racquet again someday, but most days I can’t even hold out a TV remote control. Since my hands don’t look bad most days, it’s hard to believe I’ve been able to file my nails twice in the last five years. For years I manicured them every Tuesday evening. You know the list – you have your own.

Yet, at the same time there have been good news and opportunities I never expected. Monday as you read this, I’m attending my first meeting of the Mayo Clinic Center for Social Media Advisory Board. I’ll be in Jacksonville for the next three days. This is a physical challenge; but like a marathon, it will be worth it.

The button

At the end of the movie, I thought about my video where I choked back tears, describing a doctor who said listening to patients is more valuable evidence than tests. The unsettling lack of proof of RA can make it hard as I’ve heard from many of you too.

In The Next Three Days, it took so long to get to the desperate measures because the writer was showing us that John had no alternative. Yet, there was one piece of evidence that no one had considered. A button.

Lara knows that the murderer knocked a button off her coat when she bumped into her immediately after committing the murder. The lost button could confirm Lara was telling the truth and lead to the real murderer.

If only someone would find the button. Was anyone looking for the button? I kept holding out hope.

I won’t spoil the ending for you. But I’m holding onto the button image. There has to be proof out there that can help people with RA who can’t get a diagnosis for years like a man who wrote me this weekend. One day we’ll find a way to measure disease activity before the damage is done. And one day, people won’t say what people say that man: “RA, isn’t that a disease for depressed women and old ladies?” Because we’ll have proof.

Recommended reading:

• 3 Myths about RA that are Rheumatoid Arthritis Facts
• Classic Pollyanna: My Quest for Answers to Questions About Rheumatoid Arthritis
• Evidence and Truth: WTF (Where’s the Fact?)

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The last month has been hard. Who am I kidding? The last five years have been brutal.

The RA is always the same: Just a little worse than yesterday. Like so many of you, I look for ways to make lemonade out of this bitter pain. That’s why I started health blogging.

A few weeks ago I had to be away from the blog for a week due to illness. Afterward, I pushed myself hard to try to catch up on comments and emails. Then, as I wrote the last email, AOL decided to reprint an interview that I did last year for Health.com. Life is funny, isn’t it?

You guessed it: Hundreds of emails, comments, and requests poured in.

I can’t catch up – partly because I have this thing that puts me at a disadvantage: I’m sick. At least one day per week is spent traveling to medical appointments. Lately, it’s two or three.

Don’t you feel like this too? RA makes it so hard. Sometimes, it’s overwhelming and I tell KB, “I can’t do this anymore.” I look at what I want to accomplish and how slowly I think I proceed and I say, “I just can’t do it.”

Determined to catch up, I replied to 46 personal emails yesterday. That was about half. Please read carefully: There is no complaint. I learn so much every day from patients who tell me their stories.

It never fails: Reading sad stories, I find strength and determination to improve our lives. In other letters, I receive hope and comfort to share. Either way, God uses others to fill my cup to go on with new resolve and optimism. God is good. He knows what we need.

There are so many things I want to do and plan to do to fight for RA health. Blogging about RA is the start. I truly believe that we can make a difference together and that we have already had an impact.

Below is an excerpt from one letter. The writer wanted her story to be shared to help others. It helped me and I hope it helps someone else.

An email blessing from health blogging

I also would love for you to post this if you like in a manner that would protect my name. … I find I no longer have that swagger in my high heeled black boots. They have been replaced with the most unattractive pair of shoes that I have ever seen. lol. …I write this on my day off as I come back from the rheumatologist in tears over the outcome of my appointment.  I am a 46 year old wife and mom who has battled RA for over 10 years, however, last year did me in.  I have used everything from Enbrel to Humira.  I am now on Orencia only to find at my visit that I am getting worse and need to start Rituxan.

With each time I am told that I have to try a harder drug, I cry into a towel in a room, research like mad on the computer, cry more, and then toughen it up and do what I must.  I swear at that moment that I just can’t do it anymore, I can’t hear anymore, I can’t, but something turns the switch back on and says, “Get it together, this is what you have to do and you will have peace with it.”  I remember crying over Enbrel… I find your articles and research a constant encouragement when I think that I have gone mad… I am a professional that is loosely holding on to her profession and I just wanted you to know that as I just walked in the door and switched on my laptop, I went right to my favorites (RA Warrior).  Kelly, you are an inspiration, you write from the heart, and you remain positive which is what I try to do with a disease that I call the ultimate betrayer.  One minute you think your having a good day and the next you are flat on your back.  Or, you get the comment that you look so healthy that nothing could be wrong with you.  Guess it’s all smoke and mirrors what will be drained from the good old synovitis in my joints today at my next appt in a few hours on my day off.

Today I felt like giving up as I drove out of that hospital parking lot.  What I mean by that is just giving in to the disease and what people think I should behave or be like.  I always, always get hope from reading your work.  Thank you I tell you with a tear in my eye. I know however, that I will be my normal joking self in a day or two after the initial shock of the news today and the fact that my spirit is so strong that I actually thought that I was getting better.  Not to worry.

Recommended reading:

• Do You Love a Rheumatoid Arthritis Patient?
• Managing Rheumatoid Arthritis: Transparency and the Wall
• What is a Rheumatoid Arthritis Flare?

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