Rheumatoid Arthritis Breaks Your Heart

You can file this under straight talk on Rheumatoid Arthritis.

I used to say, “Rheumatoid Arthritis is not in your head; it’s everywhere else. Then I realized that for some of us, it does get to the head. Specifically, RA gets to the jaw joints and the eyes. So technically, my Rheumatoid Arthritis is in my head.

So, I started to say it like this: RA is not in your mind; it’s everywhere else. But, lately I think I have changed my opinion on that, too. Rheumatoid Arthritis might actually change the way we think. Remember my very first post, RA can make you patient?

But perhaps it does not stop there. Rheumatoid Arthritis can also break your heart. My heart is broken by what I hear and read from other RA-ers who either post their own blogs or write private messages to me.

I have heard the ache of women who want to have children but live on medication which prevents that. Countless young ladies have told of their distress over aging much more quickly than they had planned. There are troubles with bosses who don’t understand and long-planned careers that have washed down the drain, courtesy RA. Of course there are the myriad beloved activities we are forced to curtail.

But the most heartbreaking tale that I hear is about family members who do not understand how Rheumatoid Arthritis changes the rules of the game. Women tell me they are accused of having “grown a lazy bone.” Men are distressed because their families cannot accept a lowered physical output with childcare or chores.

That is the dismay of living with an invisible illness. Pain is invisible. Stiffness and muscle weakness is invisible. One man wrote that his wife could not be convinced that his pain is very bad at all. Numerous women have told me that their husbands criticize them for their lowered standards. Just today, I read a woman’s comment about her grown son complaining of how little she can do for him now.

My heart is especially heavy for one person who may actually be divorced because of becoming disabled. This disaster is, one man or woman at a time, as bad as any I have watched in the news. It is no different than watching hurricane victims lose their homes. The suffering is just as real. But the sympathy is not.

My heart has become as sore as my wrists and hips and knees…

More than once, I have heard it suggested that we could expand understanding of Rheumatoid Arthritis if we could only loan it out once in a while. If we could let our spouse borrow it for a day, would s/he “grow a sympathy bone”? I know it is said in jest (well, probably it is), but I think there is a nugget of truth there, too.

Could it be that living with Rheumatoid Arthritis does affect your heart? For so long, I was perplexed that RA seemed to affect the nicest people. Maybe it was the other way around all along: the long term suffering of Rheumatoid Arthritis breaks our hearts. It makes us into more compassionate people.

A Summer Read for Rheumatoid Arthritis Warriors! part 3

An American History story about character and disability, part 3

A few years ago, I took my little home school on a field trip. We spent a day at Arlington National Cemetery. And the next day, we traveled to Gettysburg to stay with my daughter’s godmother. In preparation for the trip, I read a few Lee biographies. That has been an extraordinary component of our school – we could read about a person or a place, and then go check it out for ourselves. The Lees were extra special to us since my husband - and children - are related to them.

During the long car ride to Virginia, I devoured the fascinating Lee stories. I was extremely moved by Ann’s invalidism and her son’s devotion. I kept interrupting whatever the kids were reading to relate another amazing tidbit.

The accounts that I read were so old that the only word used to describe Ann was “invalid.” Isn’t that what it is when you give a wrong credit card number: in-valid. How can a person be invalid? I know the author was only using the language of his day, but still, are some people valid and others in-valid? It sounded dreadful.

Fast forward twenty months. Another field trip to Virginia. More Lee stories in the car ride. But this time, they read like mystery stories to me. What is the mysterious illness that plagued these precious ladies? I weighed every word and examined every clue. I announce my theory to my captive audience in the car.

At Lexington, we toured Washington and Lee University, where the Lees served after the War and where they are buried. There are museums and memorials to them. I remember standing in the doorway to the chapel and listening to a guide tell the story of Mary Custis Lee.

She said that Mary suffered from a painful disease. I could barely do it another moment, but I wanted to stand where I was - next to the guide. She said that Mary was disabled by Rheumatoid Arthritis. I sucked air and whispered “I knew it!” She pointed out the doorway across a yard. She showed us where they used to lift Mary down into a hot spring to occasionally relieve her pain.

The tour guide had admitted what I knew had to be the truth. She was the first person I heard use that term with regard to Mary. It all made sense to me. I was just beginning treatment for my own RA. I knew what it was that I saw in the stories just as Robert knew when he saw Mary’s plight.

Even the many pregnancies made sense now. My rheumatologist had explained to me that pregnancy was the only reprieve for women in former days. Rheumatoid Arthritis usually remits during pregnancy. So, many women would become pregnant eagerly. It makes it easier to understand how and why they continued to have more children with the added burden of the illness.

Of course Ann and Mary Lee had much in common: They were the closest thing to royalty that Americans have. They were both educated and generous ladies. They had married soldiers. They had each enjoyed the devotion of Robert. They suffered immensely from Rheumatoid Arthritis without prednisone, Enbrel, or even aspirin.

But there is one thing more: As I stood looking after the place where Mary would be humbly lowered into warm water to gain some temporary relief, I admired her. And think of Ann raising five children with no money and no husband and a handicapped daughter. Each was a Warrior. They never were defeated; they did not yield to fear or become dis-couraged. And they never became bitter. They agreed with Job that we must accept the adversity in life as well as the good that God sends.

It's Ok to Laugh if You Have Rheumatoid Arthritis

Life with RA can still be funny.

Funny things happen every day. I can laugh at almost anything. It just takes a certain perspective.

Sometimes my son doesn’t appreciate my joking so much about the RA. If I make a funny comment about how bad it is, he might look at me pleadingly and say, “Mommmma, that’s not funny!”

“Yes it is,” I told him recently. “It depends on your point of view.” I always talk to my sons in terms of sports analogies, so I talked about how hard it is to tell whether or not someone stepped out of bounds when you are sitting at the other end of the field. Point of view is everything.

My son loves me so much. He was young when I “got sick” with Rheumatoid Arthritis. He wrote me a note about how mad he was at this “evil disease.” I will always cherish that.

He went with me to my very first rheumatologist appointment. But he stayed in the waiting room. He did not see how rudely I was treated. The man typed on a laptop without looking up at me. He never looked at me. He talked while looking down at his keys. Eventually, he and his laptop escorted me to the door.

Of course, we reported the episode to the family in the car on the way home (two of my kids had been in the room with me). Years later, we were laughing about the incident with a friend who also has arthritis (both RA and OA). She had had the exact same negative experience with Dr. Laptop! Neither of us had kept him as a doctor.

My son heard us recall the story and offered to me his reaction: “You know the world could be a lot nicer if doctors would treat people right.” I think my son was calling a penalty on Dr. L. From his view anyway, the man was out of bounds.

And then, my son laughed out loud, “You know what, Momma? I think maybe the guy was playing video games on his laptop the whole time. He just never looked up because he didn’t want to stop. And he did not want you to see what he was really doing.”

We laughed. That’s very amusing, son. See? You can find the funny side to anything. You just have to look for it.

Poem by Friend of Rheumatoid Arthritis Warrior

Counting the Ways Rheumatoid Arthritis Affects My Life...
I am so glad to bring you this treat, a poem written by Rissa. She has Palindromic Rheumatism, a more rare form of RA, which you will read more about here on RA Warrior.

I love the way she gives so many details of life with Rheumatoid Arthritis in so few words. She certainly gives a window where those who don’t have RA can peek into a life with RA:

The terrorizing pain; the unexpected disability; the frustration with numerous medical tests; the ridiculous lack of understanding, even from doctors…

Thank you to Rissa! You give us a lighthearted view of such a heavy-hearted topic. You lift us up today.

The Invisible World of Rheumatoid Arthritis Speaks

Bonus: What is gray and lights up? An electric elephant.

Aren’t you amazed at the explosion of online activity related to Rheumatoid Arthritis? Of course the spammers have caught on, too. But in just the last few months, the number of genuine RA blogs has mushroomed. Every search I run turns up something new.

But it’s not just numbers. There has been a change on another level, too. You can hear fresh energy in addition to hearing new voices.

Our movement is not unified by any organization. There is not one single message, but many distinct topics and styles. So what is it that gives Rheumatoid Arthritis patients a sense of cohesiveness?

I believe that there is a noble goal, a thread which ties us all together. It is this passionate cry: We will be heard.

We have all decided that we must be heard.

This interest is no fad or hobby like so many blogs. For us, this is about our lives. We do not write or network as a mere diversion. We are putting our hoarse voices together so that we can be heard. Period.

I want to be the first to forcefully state that no matter how many there are with this message, there are not too many. Every day that this field is expanding, we are closer to an understanding of this complicated disease and then a cure. Every clear and honest voice is a contribution to that goal.

Rheumatoid Arthritis has been called an invisible illness. Our world is different from the non-RA world. And sometimes they are not even sure RA is real. What do they understand about our reality?

It is as if we are in a world like the one which Horton saved on the pink clover. I want to be like Horton, my favorite elephant. I want to encourage every voice to speak up until we are heard and the world of Rheumatoid Arthritis is truly recognized as Whoville was in the end. Each of our voices is needed.

Like the Mayor said in the story: “We’ve GOT to make noises in greater amounts! So, open your mouth, lad! For every voice counts!”

Hope for Rheumatoid Arthritis in a Spray Can

Hope, the noun, is like oxygen. Hope, the verb, is like breathing.

Living with Rheumatoid Arthritis requires hope. Of course, we hope for a cure. We hope that the medicine will work. We hope the doctor will listen. We hope that the insurance covers our tests. We hope people will understand when we can’t do what they expect us to do. How are we going to get this much hope?

A couple weeks ago, I read this blog on hope and it really got me thinking. I totally agreed that hope is essential. In fact, it is like oxygen; we need it to go on. That’s unmistakable.

But I kept thinking, how do we get it - and keep it. Why do some seem to have more of it? Sometimes, I wish I could buy hope in a spray can. That way I could spray it like air freshener as I walk through the world.

After wrestling with it, I realized that hope is not only a noun, but also a verb. The thing “hope” is what we pursue. We all want to have plenty of it and never run out. We’d like to have enough to share. When we are compassionate, we give out some of it to one another. Or God can give it directly to us.

However, hope, the verb, is harder to nail down. We say, “I hope things will change,” and we are trying to will it to be so. We strain towards that goal. Indeed, hoping is something to do. We can either do it or not.

When we do it, it is a choice to do it. It may not be a conscious choice usually, but still it’s a choice - like how much ice cream to eat or whether to wear a seatbelt. There are some things which we can do both deliberately and automatically, like breathing. Hope, the verb, is like that.

If hoping is hard to do, maybe we can get better at with practice - like speaking French or decorating cakes or playing tennis. It’s like a muscle which needs to be exercised so that it can grow stronger. That’s what we are doing when we practice hope against heavy odds; we are weightlifting. When we have to keep on doing it and it seems no end is in sight, we are wait-lifting, too.

If we exercise our hope muscle, we may get really good at it. Then, folks will wonder why we have so much more of it than other people seem to have. “That’s okay,” you can say, “I am willing to share the fresh air. My spray can is full. Breathe in deeply.”

Holly's article on Hope at Health Central

Two Kinds of Site Reactions about RA

It’s been a week of site reactions. There were lots of positive reactions to the new blog site. After a few days, I realized that I was receiving two distinct flavors of responses.There have been those who were en- couraging: "Nice article”; Good writing”; and “Well done!” I am so grateful.

Then there were the reactions that came from those suffering with RA or another chronic illness. In some way, I think they heard my voice differently - like we are speaking the same language. They said things like: “This is so hopeful!” and “Wow, can we pray for each other?” and “Thank you, Kelly. It’s ok to say I hurt.”

Everyone was positive (Yeah!!) and everyone was sincere (I think!)

What I detected may be a symptom of the detachment which exists between the world of Rheumatoid Arthritis and the non-RA world. I have read hundreds of pages of RA blogs and forums and message boards over the last three years and at least as many times as I read, “It hurts,” I also read “No one gets it!”

I want to build a bridge. This blog is my first baby step. Please join me in working to disassemble the partition. That brings me to my second “site reaction” that I observed this week.

Normally, I would never share this with anyone (except RA-ers). But, here goes. I have been really suffering with an injection site reaction (ISR) to the Enbrel. It’s like a huge 4” bee sting on my leg. It’s hot and hard and itchy - it hurts. When I lie down, it feels like there’s a rock under me. This is the third ISR in a row, and each one is worse, and appears sooner after the injection.

It is amazing how much this ISR is like a bee sting. I wanted to post a picture of my leg, but it’s pretty bad. So, I decided to look for a pretty picture of a bee…

Maybe he can also inspire us to be like carriers of understanding the way he goes about spreading around the pollen. We can touch others lives like the bee, letting something also rub off on us like the bee. I am thankful for the way that others rub off on me and I hope that I can write things that will be penetrating – hopefully without all the itching, though.