Warning: This post is for the faint of heart.

Tired of the stages of Rheumatoid Arthritis grieving

Yeah, I’m probably not supposed to say these things. Whatever…

Some of these RA changes are wearing thin. I never wanted to be branded by anything negative. I’m getting tired of feeling like I’ve lost credibility because of the chronic illness label. Does anyone else feel like this?

Tired. I’m tired of hurting all the time. Also, I’m tired of having to pretend I’m absolutely fine and physically able around folks who can’t handle the truth. It’s physically so difficult to do that – I have to avoid people most of the time. Tired of losing that social interaction, but it’s too difficult.

You know what else? I’m tired of not being believed. A pharmacist just told me, “At least you are not really sick. We have really sick people.” But, we need these expensive medicines to treat the disease. Employers don’t like to pay the health insurance premiums for an RA patient either. Did you ever have to defend how expensive you are?

I’m tired of so many things. I’m tired of the way it’s assumed this RA pain only bothers me when I mention it. If I’ve explained what it’s like, then why can’t I be believed? Stop telling me you know I’ll feel better tomorrow – it’s been four years of RA pain that only gets worse.

Remember the RA Help button last month? This time, I’m looking for the Eject button. Do you get the feeling there is no way out? Like Alice in Wonderland: Where’s the right door? What’s the right mushroom?  

Stages of Rheumatoid Arthritis grief: enough already

Sometimes, we just feel like we can’t take it anymore. The other day, someone left a comment about wanting to go in the closet to lie down and die from too much pain and too little understanding. And no way out. There are many others – I could go on.

Maybe you’ve read this post on RA depression. There is some discussion of the normal stages of grief and how they relate to RA. Would you believe I just read an article about the anti-depressant Prozac (Celexa) being used to fight Rheumatoid Arthritis in an experiment on mice? Wouldn’t that be convenient?  

My rheumatologist asked me if the medication “failures” depress me. I explained that I’m fine because I have had contact with others who live with RA and that has helped me. I know I am fine – I am just tired of being fine with RA. I’d rather be fine without RA.

Recommended reading:

• Where Is the RA Help Button?
• The Rheumatoid Arthritis Warrior’s RA
• Be Your Own Counselor with Rheumatoid Arthritis
• Rheumatoid Arthritis and Depression

Dear friend of a Rheumatoid Arthritis patient:

Last year when I wrote my first memo to Non-RA’ers, I tried to explain in simple words what it is like to be a Rheumatoid Arthritis Patient (RA’er). I thought that if I explained Rheumatoid Arthritis in terms of injuries and illnesses that are familiar, it would be easier for you to understand what it’s like for the RA patient you love.

Really, I was trying to help you understand what your RA patient needs you to know.  It might make a difference in your expectations if you can imagine for just a moment what an RA patient experiences. The kind of pain and weakness that hinders your performance once in a while due to a sprained knee or kidney infection limits RA patients every day.

Can you relate to this? When you’ve just had shoulder surgery, you don’t expect to be asked to shovel the driveway. If you had a broken leg, you would want people to know not to expect you to join in a bike ride. Most Rheumatoid Arthritis patients live with these kinds of problems in several joints every day. For some, it’s every joint.

There’s not some fuzzy math here either. Don’t believe that the pain is divided evenly since RA patients hurt in more than one place at a time, with each joint hurting just a little. Each single joint or tendon hurts as much as the one joint in the injury example. RA uses multiplication, not division. Actually, RA patients often state that when they have had injuries or surgeries, the pain and disability is much less than that of Rheumatoid Arthritis.

Please learn more about the Rheumatoid Arthritis patient in your life

There are so many other things I wish I could tell you. I’ll close with a request. Please learn before you judge. Every day I read comments from RA’ers who cannot get people in their lives to believe how difficult and painful living with RA is. They are not accommodated.

Is it that they are not articulate enough to explain it? I don’t think that’s it. Maybe people just doubt what they cannot see or feel for themselves? Here is a way you can see much clearer. Spend some time reading comments on this blog or scrolling down its Facebook page. A little while doing this would change the life of the RA’er you and I both care about.

If you want to learn a lot more about RA, start with RA 101 on the top menu tab. Also, this link will take you to every post on this blog which is specially written to explain RA to you who do not have RA. Click on individual titles to see comments or post one.

Note: I grant permission for the reprint of this post if it remains entirely intact and my copyright statement remains attached.

Recommended reading to help you learn more about RA:

• Rheumatoid Arthritis Disability Makes Things Difficult
• 13 Ways to Help People Living with Rheumatoid Arthritis
• 20 Things Not to Say to a Rheumatoid Arthritis Patient

I’ve failed. I’ve been writing about Rheumatoid Arthritis for a year and I have not been able to explain exactly what it is like to live with Rheumatoid Arthritis (RA). Sometimes, I think that I need to say it louder or use bolder print or stronger adjectives.

One problem is that I try to be nice. But RA is not nice. So how can someone get a clear picture?

I didn’t want to be called a drama queen, so I’ve held back. It’s not that I care what people think – I just want them to listen to the message. Sometimes, you can overwhelm RA unbelievers with too much information and they tune you out.

The Disconnect about living with Rheumatoid Arthritis

The last few months, I’ve been trying to figure out why there is such a “disconnect” with RA. People who live with RA frequently say, “No one understands.” In one of my first RA blogs, I mentioned “the wall” between RA and the non-RA world. At that time, I believed that the wall was mostly due to ignorance. However, the more I learned, the more confused I got.

When I read books or articles about RA or watch commercials about treating RA, I see a different disease than the one I live with or see in others I know. So, I started to wonder what the doctors see. Do they see the RA that we live with? What do they hear when we describe it? Or do they hear Charlie Brown’s parents: “Brwa bwah rwa. Pwah bwah arw”?

Twice in four years has a doctor ever allowed me to describe some of my Rheumatoid Arthritis symptoms. But I still did not feel heard. And no one else has ever asked me what it is like.

Unsolicited, here is what it’s like to live with RA, as briefly as I can say

All of my joints are tender to the touch. At any one time, several joints hurt with sharp pain that is similar to an injury. If I’m alone, I cry out in pain. If I’m not, I just breathe in and pray.

My joints are too weak to do most things. I stumble and drop things. If I use a joint to do anything, then it quickly becomes tired and useless and painful.  Everything I lift is too heavy. Everything I do is a struggle. I try to look as normal as possible.

As I breathe, my sternum joints hurt. My stiff jaw makes eating certain things awkward. I eat meat with my fingers instead of using a knife. The sound inside my neck of crackling at the base of my skull never stops. It scares me.

When I go to a store, I cannot keep up with my kids. They look on in horror as I am shoved out of the way while I struggle to navigate. Senior citizens often run the shopping cart into me out of impatience, complaining that I did not get out of their way.

I have a low-grade fever a few days per week. Most days, I feel like I have the flu. I fight nausea as I struggle to inject chemotherapy (methotrexate) every week.  I have said, “I’m sorry I can’t do that. I have a disability.” And had someone laugh out loud to my face in public.  More than once. I never know when I will lose my voice or for how long.

Even though I never tell anyone what I just told you, most people I know judge me. They let me know that they think I’m a hypochondriac.  That’s one reason I don’t mention the list of my other diagnoses like most healthcare bloggers do.

Postblog: Rheumatoid Arthritis is a heterogeneous disease, meaning that yours may differ from mine. Also, mine may differ from mine, over time. This is the nature of the disease and not proof of malingering.

Coming up on the blog: We’ll ask more about what doctors think RA pain is like and why they might not hear what we tell them.

Recommended reading:                                                                

• Part 1 of my description of RA: What Is it Like to Have Rheumatoid Arthritis: The Usage Principle
• Part 2: What Is it Like to Have Rheumatoid Arthritis? Part 2: Why Don’t They Tell You?
• My confusing quest: My Quest for Answers to Questions About Rheumatoid Arthritis
• My first thoughts about the wall: Managing Rheumatoid Arthritis: Transparency and the Wall

Compared to RA, pain in the necks like these should be easy to cure

Rheumatoid Arthritis pain can be aggravating. However, something has been just as aggravating lately.  It’s the pain on my head from banging it against this wall of ignorance. Almost every day I read some preposterous statement about RA or RA pain reported in the news media or a medical or science website.

Last week, there was the ABC News RA report which made it sound as if RA were all but cured.  Yet, the doctor was claiming that only one third of those with RA actually need to be treated with the modern medicines. We’re always told this is the best time to have RA. Does that make sense?

Whatever… I don’t have time to stay aggravated since I have too much else to do. But, if I blink, another one appears. This week, there was this report about computer usage and RA. I think this report was sent to me through at least a half dozen venues. The report claimed that keyboard (typing) skills are unaffected by RA. The first few times I heard it, I ignored it as just more ignorance. But, eventually, it bugged me to see how it was so widely distributed, and likely, believed.

Everyone seemed to pick up the story and run a headline like this: “Don’t worry that RA will affect your work” or “RA doesn’t slow typing” or “RA patients have no problems with keyboard use.” I had no intention of refuting the stupid little study here because it seemed like a waste of time. If anyone is truly curious about whether RA actually does affect typing, please comment below & I’ll consider writing a post to refute it properly.

 The point: Can anything be done about this RA PR pain?

A few hours ago, I had a lovely conversation with a new friend. She is a long-time veteran warrior against RA. As often happens between two friends with RA, the conversation turned to this: How will we change the misperception of this disease?  The first thing brought up is always the name.  You’ve probably heard it a thousand times: “arthritis has nothing to do with RA, so we need a new name.”  I’ve heard more discussions about this unfortunate name problem than Windows has updates.

The second thing we thought about was an accurate portrayal of RA to the general public. I have mentioned before how truthful medicine advertisements have done so much to improve public awareness for other conditions such as osteoporosis, which is just one of the problems RA’ers tend to have.

A third problem we might address is doctors. I’ve written about how little the RA I meet in person resembles the RA I meet in books. Which one do you think docs are trained to trust?

Do you think we have a shot at change? What do we need to do?

Next week: Do RA’ers just have lower pain tolerance? Yep, that’s a really being discussed.       

Related posts:

• We can make an impact: The Truth About Rheumatoid Arthritis Info Will Be Told!
• Are the patients doing their RA right? Is There a Typical Rheumatoid Arthritis?
• Put this in the books! What Is the First symptom of Rheumatoid Arthritis?
• Let’s get this straight: 3 Reasons to Stop Saying “Complications of Rheumatoid Arthritis”

What if there were a cure for Rheumatoid Arthritis or you had a genuine remission from living with RA?

Like many, this post is inspired by a conversation with another person living with RA – actually, several conversations.  We aren’t dwelling on the negative, just dreaming about what we we’d love to do. I thought sharing it here might provide a hint of realism to those who do not comprehend what we lose while living with Rheumatoid Arthritis.

Some of these are things I would like to do again because I thought they were so wonderful, I did not give them up voluntarily. Others, I’ve never done before –bet you can guess which ones.

10 things I long to do

1. Get a dog. I could not imagine my life without a dog, but here it is.
2. Build beautiful gardens. I moved right before RA, leaving mine behind.
3. Finish my last quilt.
4. Ride a bicycle.
5. Go to medical school & become a doctor so healthcare professionals would listen to me tell the truth about living with RA.
6. Walk in an “arthritis walk,” pointing out how to the press that countless people cannot participate for themselves.
7. Paint intricate decorations onto hundreds of delicate buttery cookies. Give some of them away as gifts – Hey, they taste too good not to keep some.
8. Run for an hour on the beach barefoot at sunrise.
9. Have another baby.
10.  

I could not finish my list. It was too hard to choose one thing and leave everything else off the list.

I’m sure your list is unique.  What did I leave out?

Recommended reading:

• Fun description of the “adapt & repeat” of living with RA: The Shifting Sand of Living with Rheumatoid Arthritis
• Still doing some hard things by adapting: 6 Ways to Get Hard Projects Done With Rheumatoid Arthritis
• Why we can’t trust blood tests to diagnose RA yet: Blood Tests for Rheumatoid Arthritis, part 2

Another kind of Rheumatoid Arthritis Treatment: how people treat RA

Imagine treating a broken arm with a band-aid. How would it be if a heart attack were treated like the flu? What about telling someone with breast cancer to just go on a diet? Crazy.

However, people often minimize Rheumatoid Arthritis symptoms. When they do this to folks living with Rheumatoid Arthritis, they act like RA is a not a big deal. That would really be fine – if only it were true.

Recently, I asked RA’ers to tell me the most inappropriate things people say to them. I thought it might be funny if we looked at them all here at once. Of course, it might be a learning opportunity besides.

I’ve compiled a list of the top 20 answers I received via Facebook, Twitter, e-mail, and direct message.

1. Aren’t you feeling better yet?
2. You’re not old enough to have arthritis.
3. Oh, I know; me too.
4. Exercise would really help you feel better.
5. You don’t look swollen, sick, or ______
6. Have you tried counseling? Maybe you’re depressed.
7. Why do you walk so funny?
8. No, it’s not heavy. Here, hold this.
9. Have you tried the blue stuff?
10. You’re feeling achy. / The aches & pains of arthritis.
11. Why didn’t you try glucosamine (or Omega3 or gluten-free…) before you tried that medication?
12. Just drink this juice. (Or eat blueberries…)
13. Is that your handicapped parking tag?
14. You just need to lose some weight. (Or gain weight!)
15. I’m glad you’re better now.
16. At least it’s not cancer. It’s not like it will kill you.
17. I read about a woman who cured hers with…vitamin supplements, antibiotics…
18. You just have a low tolerance to pain.
19. My Grandmother had that.
20. I used Tylenol arthritis and mine went away.

How about you? Did I miss your favorite one? What do people say to you?

Note: A special treat coming up on the blog: an interview with a young lady who will inspire you.

Recommended reading:

• One more thing not to say: 3 Reasons to Stop Saying “Complications of Rheumatoid Arthritis
• Send someone this video! Working and Rheumatoid Arthritis
• Finding a good doctor: 21 Things to Know About Finding a New Rheumatologist
• I’m out to destroy the mythical RA! To Tell the Truth: Will the Real Rheumatoid Arthritis Please Stand Up?

Are there any sympathy rules for living with Rheumatoid Arthritis symptoms?

The other night, one of my boys said to another, “I’m not doing that. You do it. I’m sick.” Nothing serious – there have been several courses of cold and flu in my household recently. But, I raised my eyebrow.

Of course you can think faster than I can type and you are one step ahead of me. I thought: I’m living with RA; when do I get to say that? When is it my turn to say, “I’m sorry, I’m not doing that; my Rheumatoid Arthritis symptoms prevent that”?

What are the rules? When I was 8, I got to go to bed when I was sick. There were some perks to sick days.

What does Rheumatoid Arthritis pain have to do with a kidney infection?

Except for the Rheumatoid Arthritis diagnosis and thirty years of thyroid disease, I’ve always been very healthy.    Lots of RA’ers tell me that – probably it’s due to the extra strength immune system which also causes the RA. However, last Easter, thanks to my medically suppressed immune system, I had my first kidney infection.

What did the kidney infection teach me about RA?

The kidney caused pain in my lower back which was similar to Rheumatoid Arthritis pain. It hurt. I’ve described my high tolerance for pain before.

For a few days, I lived with the kidney pain, only mentioning it to my daughter. I had antibiotics. It would be gone soon. Suck it up.

Word did leak out about the kidney infection though. And what followed was startling. It still amazes me.

Someone called me on the phone just to sympathize. She said, “Ooo, that hurts!” Then, during a period of three hours, three different people called and said almost exactly the same thing. At that point, I’d been living with Rheumatoid Arthritis for over 3 years and no one had ever said that to me.

With a 3-day old kidney infection, three people went out of their way to say,”Ooo, that hurts” within three hours. Every one of these women is a kind, sympathetic, Christian woman. But none of them had ever expressed such sympathy to me before as I lived with the RA.

In case the reader does not have RA, let me be perfectly clear. The kidney infection did hurt and my fever was 104 F, but it was nothing at all compared to living with Rheumatoid Arthritis.

It has been 6 months and I am still haunted by this episode. Why is there so little sympathy for those living with Rheumatoid Arthritis? I don’t really want sympathy. I just want an answer.

I do not want sympathy; I want to be well. I want to do everything I used to do – and do it quickly and easily…  And I want to do it all by myself – without needing help or having people wonder what my problem is. I want to be the caregiver of my children for many years to come, not have them take care of me…

Meanwhile, living with the reality of Rheumatoid Arthritis

The Rheumatoid Arthritis diagnosis itself is devastating. Unsympathetic reactions are an added burden. We will be okay without sympathy, but I for one, am curious: Why is there so little of it for those living with RA?

Recommended reading:

• 3 Reasons to Stop Saying “Complications of Rheumatoid Arthritis”
• My Quest for Answers to Questions About Rheumatoid Arthritis
• What is Remission of Rheumatoid Arthritis? Part 1
• Psoriatic Arthritis
• Is there a blood test for Rheumatoid Arthritis? Part 1

A dirty little secret of RA: The Usage Principle

Certain aspects of Rheumatoid Arthritis are invisible. It’s hard to track with an invisible illness. But lucky for ya’ll, I know what living with RA is and I’m willing to tell the secrets.  

So, if you don’t have RA, prepare to have your eyes opened. And if you are an RA’er yourself, take pleasure in knowing you are understood here. Enjoy the ride and I’ll be glad to validate your parking, too.

One revolutionary reality of the Usage Principle: Moving makes RA worse

Let’s talk about moving. There are times when stiffness, swelling, or pain prevents movement. There are other times when we can move, but there are consequences. Understanding how this works would forever transform the advice given by rheumatologists and other arthritis “experts.”

In a recent comment on the blog, Jane explained the consequences of this principle. She said, “I have spent the last week in bed with flared up hips from going to a band competition where I had to walk for a long way and then sit in bleachers for several hours. My hips flared up, I feel like I am walking with bone rubbing bone. Prior to that, I was feeling fairly well.” Moving around too much and sitting still too long without proper support left Jane unable to move during the following week. It’s perfectly ridiculous – unless you have Rheumatoid Arthritis.

Moving usually makes RA worse. I think I’ve tried to explain this too gently in the past. I need to say it more slowly so that we can bridge the RA language barrier: Moving usually makes bad RA worse.

Yes, yes, there are milder cases of Rheumatoid Arthritis which only affect a couple of joints. There are also cases of Palindromic RA. For those dear people, I have this advice: Move as much as possible while you can. I hope you do not ever get the full-blown RA that we are discussing here today. But in case that is in your future, do everything that you would wish you could do again. Don’t waste time.

“The shopping problem”

When it gets to the point that I am knocking on Old Mother Hubbard’s door to borrow some food, I give in and go to the store. It was not always this way. Have you read about any of my former shopping practices? I loved to go at off hours so it did not take time out from my family or my busy schedule.

Here is how it works now: When we are getting desperate, I go to the store. I don’t dare go alone. We get out of the car. One of my kids grabs for my purse. Often, I say this: “Oh, no. I can carry it.” But, they know the Usage Principle, so they are not be fooled by my delusional attempts to do everything for myself.

At first, I can walk at a normal pace. There may be half a dozen joints in pain, but I am fortified by ibuprophen and my optimism. I’m happily distracted by great deals over here and cute babies over there. I converse with employees and chit chat with other customers. Gradually, I move more slowly.

After about 15 minutes, the Rheumatoid Arthritis makes my knees, feet, and elbows hurt. Being adept at ignoring pain, I walk on. The foot pain gets worse, but I hardly notice it because one at a time my hips go “out.” Since it’s much harder to walk, I progress more slowly now.  My helper runs back and forth to get things while I move slowly with the cart.

By the time we hit the half-hour mark, the scene is worthy of stares.  I’ve read a lot about stares and Rheumatoid Arthritis, so I don’t feel too peculiar. I move very slowly and look for anywhere I can find to sit down – even the floor. People really don’t like it when you sit or lean on a display or any part of the checkout lane.

Between 45 minutes to an hour after I first entered the store, I’m trying to leave. I can hardly walk, shuffling my feet and leaning on anything I can for support. The pain is horrible, but the frustration is worse.

The next several hours will be very difficult because of The Usage Principle. I do not give in to the Rheumatoid Arthritis, but I am not the winner either. I always go down fighting, but I go down. RA is a very powerful adversary.

The difference is RA

The difference between me and other people is neither that I’m lazy or crazy. So, please do not recommend psychiatry or physical therapy to fix this problem. The difference between me and other Wal-Mart shoppers is Rheumatoid Arthritis.

I realize how much RA can sound like malingering. Like most RA’ers, I endure reactions of skepticism. Who can believe something so invisible can be so powerful?

Non-RA’er, this is your lucky day

You are lucky to read this blog because I know the truth, having lived on both sides of this fence. Unless you have, you may not know. However, you can take my word for it. I have told you my secret: The Usage Principle.

Note: The “shopping problem” is also known as the “typing problem”, the “gardening problem”, or the “went to a football game problem”… these are all demonstrations of The Usage Principle.

Recommended reading:

Rheumatoid Arthritis Makes Things Difficult

What is Remission of Rheumatoid Arthritis? Part 1

Should Rheumatoid Arthritis Patients Exercise, Part 2

Should Rheumatoid Arthritis Patients Exercise?