Some Answers for Rheumatoid Arthritis Just Bring More Questions

If stress weakens my immune system, why doesn’t that cure me?

And other weird questions no one will answer…
Many people advise me to avoid stress since it can weaken the immune system. I’m sorry, but there’s just something funny about that. I’ve been sort of afraid to ask, but don’t I WANT my immune system weaker? Don’t I take meds to knock it to its knees? Doesn’t that make stress my friend? If I could just get enough stress, wouldn’t I be cured?

Some of these questions just beg to be asked. They are just too embarrassing to say out loud. Why do medicines for Rheumatoid Arthritis have to make you feel lethargic and gain wait? We can barely move around already. Why can’t treatments for Rheumatoid Arthritis make you lose weight and have more energy like the ones for ADHD?

Here is a really tough one: When I say, “I CAN’T,” why does everyone hear something different? There must be something wrong with the reception. People hear, “I don’t want to.”
Listen, I do not even mean to say, “Well, I would do that, but it would hurt.” I REALLY mean, “I CAN’T do that right now.” I should probably just say it louder. That works with the TV when the reception is bad, right? Just turn it up.

I have more questions: If rest is so good for me, why does it make me so stiff? How am I supposed to sit down and rest when my knees and hips don’t want to bend? If we have made so much progress in the world, how come shoes were custom made to fit in the pioneer days, but there are so few to accommodate Rheumatoid Arthritis?

Another: And why am I told to protect my joints on one page of a “living with Rheumatoid Arthritis” book. And then on a different page of the same book, I am encouraged to exercise using those same joints. Why is the exact same motion considered to be dangerous in one context, but healthy in another context?

More ironic questions: Why do people think if you have Rheumatoid Arthritis, moving to Florida will cure it? (I live in Florida; No go.) Why do people tell us “No pain, no gain”? What are we supposed to gain from pain anyway?

And here’s one: Since there are so many cures for RA on the internet, why doesn’t my doctor know how to cure me yet?

I would like to take a vacation someday. I hope it won’t reduce my stress so much that it would increase my immune activity. That’d be bad for my RA – and really stressful.

Old and New Adages for Rheumatoid Arthritis

Unbreakable Laws?

Funny, here we are at the one of the most beautiful beaches in the world. And I haven’t seen it yet; it is pouring. Makes me think of Murphy.

Murphy’s Law: If anything can go wrong, it will go wrong.

When I was a little kid, my parents introduced me to Murphy and Murphy’s Law. We even has a little book with all of the corollaries and axioms. I learned Murphy’s Law was like gravity – an unbendable law.

Of course, when I was a little kid we put a man on the moon. And I watched on T.V. So much for gravity.

Murphy’s Law is a real law, like gravity. Things do tend to go wrong. This is a fallen world. But we repeatedly overcome gravity, don’t we?

Mottos

Murphy’s Law is not my motto. I have more than one motto, but most often I say, “PollyAnna was right.” Not the bogus version of PollyAnna so frequently mocked –but the real PollyAnna in the original book by Eleanor Porter. She used to look for a reason to be glad in every trouble.

In the story, PollyAnna’s father taught her to play the glad game as they battled poverty and the death of her mother. PollyAnna eventually lost her father too. I think PollyAnna knew about Murphy.

She just did not choose to let Murphy win. Before he died, her dad had explained to her that the Bible contains hundreds of commands to “be glad.” He figured that there must be a way to follow the command in spite of circumstances. So, he had invented the glad game.

My Modification of Murphy’s Law

I do not ignore Mr. Murphy. My Rheumatoid Arthritis has not given me the luxury of that much denial. I am forced to confront reality.

Rheumatoid Arthritis is like a dirty diaper: ignore it at your own risk. You really can’t do that for long. So, yeah, Murphy knows where to find me.

Murphy cannot be avoided. I do not want to give him too much credibility however. So, I say this: Murphy lurks.

I am aware of his schemes, but I have my ways of dealing with him.

By the way, the kids are having a great time with games in the cabin. And no one is sunburned. And did you see that rainbow?

Laughter as a Weapon Against Rheumatoid Arthritis

A Fish Story



If you have read many Rheumatoid Arthritis Warrior blog posts, you have already realized that laughter is a critical part of my arsenal to fight RA. Sometimes, some of my friends and I try to out-funny each other. It is a one-upping game. The loser is the one on the floor laughing first. Hey, wait! I think SHE is the winner!

A while back, one of my best laugh-mates sent me her reaction to a blog. It was the blog about how some people think a good hair day means the Rheumatoid Arthritis is cured. I think she was trying to figure out what she would say if she had to deal with peculiar comments like that.

“I have started taking a sandwich size Ziploc bag with ice in it to church for my painful hands. At greeting time I don’t mingle and shake hands, I sit in my seat, and when people come up to me I indicate to them my hands are too painful to shake. After the service I carry out the little baggie of melted ice, and when people ask me what I have, I tell them it’s my pet goldfish. So help me, if one of those difficult people are brave enough to approach me, I will act upset to see no goldfish, tell them where I was sitting, and ask them to find it for me . . . please, before the poor thing dies. . . . .!!!”

Actually, it sounds like she would have fun if one of “those people” ever addressed her!

Maybe we need to give this approach serious consideration. It might help us in our fight to dismantle “the Wall.” Let’s back up just a bit:

Here is a typical sequence. First of all, something about what we say or what we do does not measure up to someone else as being ordinary / normal. However, since our illness is invisible, it does not make sense to others. Then, someone who is ignorant about Rheumatoid Arthritis makes a churlish remark. We feel insulted.

Now is the fork in the road. We choose how to respond.

1) We can refute their ignorance. And then they can choose to either accept or deny our offering of truth and science about RA.

2) We can ignore their comments, privately either brooding or forgiving.

3) OR, sometimes, we can break the tension with laughter. Laughter is proof that even though our bodies are riddled with Rheumatoid Arthritis, we are also normal folks (with feelings).

And sometimes, laughter puts a little crack in that wall, too. Maybe we can talk to the person through the keyhole and teach them about RA after all. Let’s see whether cracking up can trump a wisecrack.

Note: “the Wall” is my term for the barrier which can block productive communication about Rheumatoid Arthritis. Most often, people throw up the wall because of denial. To read more about the Wall, click here.

Also recommended:
So Glad Your Rheumatoid Arthritis Is Cured and Be Your Own Counselor With RA

I Failed the Rheumatoid Arthritis Control Quiz

My Response to WebMd's Quiz on Rheumatoid Arthritis Control - Can you tell my doctor?

WARNING: Sarcasm ahead.

WebMd sent me a quiz in my email box. I never do online quizzes. I heard they collect data for later use. Besides, my wrists and fingers hurt, so I have been trying to resist any pointless typing or mousing.

But if it is Rheumatoid Arthritis data, that might help someone some day. So, I made an exception and filled out the quiz. To my surprise, there was an instant diagnosis (reply). How nice! My other docs make me wait hours. Is the WebMdDoc (WMDoc) a real doc or does it just play one on the internet? Could I stay home and get my prescriptions from here…

Here is part of the answer WMDoc gave to me:

“According to your responses, you don't have good control over your RA symptoms. The condition is taking a toll on you, emotionally and physically. You may also worry about the future -- what happens if your symptoms get even worse?”

I did not try to reply to the WMDoc’s email. I know there are thousands of patients waiting to be next on the quiz. However, I will share some of my responses with you:

“Control”? I don’t have “good control”? Look, if I were in control, I’d tell the RA to get out of my body, out of my house, out of this world, and never show its horrible face again. Yes, WMDoc, I guess you’re right; I am not in control of the Rheumatoid Arthritis.

“A toll on me”? YA THINK? “Emotionally and spiritually,” huh? Yes, a toll higher than the Beeline to Disney collects each day. And how about tolls PHYSICALLY, FINANCIALLY, and RELATIONALLY? I am not sure you really understand my plight, WMDoc. Did they require any empathy classes at your medical school?

My “future”? Am I worried about whether the “symptoms will get even worse”? Uh, yeah… That’s why I am taking all these meds and seeing so many doctors like you. Thanks for mentioning that it might get worse. I do know that since I have friends who are worse off than I am. However, I do get lost in hope of a cure sometimes and it’s great to be brought back to earth.

Another excerpt from your reply:

“But now is the time to take action. It sounds like your current medications aren't doing enough. It may be time for a new treatment approach. See a rheumatologist -- or arthritis expert -- to see what you can do. With a good treatment plan, you can get your life back.”

I can see that paragraph is meant to be encouraging. Please forgive me if I sound picky, but I must question your choice of words again: You said, “You can get your life back.” I have heard that one before. Where did you learn that? How long did you really study Rheumatoid Arthritis in medical school? Was it summed up in one morning seminar?

It would take me hours to explain to you the truth about RA and whether I get my life back with “a good treatment plan.” Can I suggest a little blog I know? You could learn a lot about how Rheumatoid Arthritis actually affects people’s lives. Don’t forget to read the comment sections. There is a lot of valid data there too. Most of the folks who participate are real Rheumatoid Arthritis patients – they don’t just “play one” on the internet.

By the way, would you be willing to do a consult with my other RA doc? He says that my Rheumatoid Arthritis is under perfect control and that I appear to him to be doing fine and dandy.

Friend of Rheumatoid Arthritis Warrior Shares Her Heart

I am so lucky to know a dear lady who sends me letters of encouragement about this blog. She is the widow of a man who lived with RA. I always wish everyone had an opportunity to hear some of her clever and uplifting words, so today I am sharing some of them with you.

I give you my friend Dorothy, one of the funniest senior saints in the world. I hope you can hear her smile.

You know what Rheumatoid Arthritis is because your husband Gil had it, right? I know what it is and every effort you put forth is sometimes like taking money out of the bank. It is NOT like, "If you would just exercise those joints, all this would go away."

How did his RA start?

He was also a florist. It became difficult for him to even cut the stems. That is when we noticed the decline, which got severe in a short time. Most noticeable PAIN was in his hands. That is why I cringe when I think of squeezing your hand that day, but within a few months he began to have difficulty walking. He ultimately had to use a wheel chair. Remember that he was also dealing with the COPD which is probably unrelated, but compounded the RA issue.

How did people react?

ABSOLUTELY MAGNIFICENTLY! They were compassionate, supportive, loving. When Gil could no longer leave the house, they came to see him. He was so active in the church. The RA was an added burden that did really COMPOUND his original problems, causing the additional pains. And, ultimately crippled him.

Do you think you understood?

Even though I saw my husband suffer so much to the end, I am sure there is something missing in MY comprehension of exactly how it is because I personally have not endured the physical suffering. Only the pain of seeing someone you love suffer. And there is the impotence you feel in watching and not being able to help. But, it is still not the same as being the victim, of course.

Thought for the day: Never criticize a person until you have walked a mile in their shoes. That way, when you criticize them, you are a mile away from them… and you have their shoes.

People just don't have a real sense of the depth to which it reaches and the attack it renders on the body.

Do you think anyone else understood?

It is difficult to relate to RA unless you have it. I agree that a person who has not experienced RA cannot have that level of understanding & compassion. Somehow, "I know how you feel" sounds like a platitude. And you want to shout out HOW IN THE H... CAN YOU POSSIBLE KNOW HOW I FEEL? Can YOU move your arms today without screaming? Can you pick up a bag of groceries? Can you carry a pot to the stove? Can you cut a flower stem to make an arrangement for your church? Do you PRAY no one will squeeze your hand when you greet them? Then how can you know how I feel?

Do you read the blog?

Sometimes I think I am a SPY because I do not have RA. But you are such a beautiful crusader for this cause that I feel compassionate and enlightened by each message I read. HEY, I loved your "compassion" message to Mrs. Smart a_ _, uh Toes.

SO often when I read the joyfulness, then also the sadness, in your messages, I realize that in addition to the agony of having to live each day with a crippling disease that was in charge of everything Gil did - that controlled his entire body no matter how optimistic he tried to be. It was frustrating to see that even those close to him, didn't have a clue. Maybe even myself.

What was the hardest part?

He did not want PITY... just understanding. As I think you do also. It is LONELY out there when you are the only one who understands anything. And especially something which controls a MAJOR part of your life. No, he DEFINETELY did not want sympathy, but, yes... understanding. Here was a man who sewed all the drops and costumes for VBS, made CHOIR ROBES, did all the flowers for the altar. He bought them wholesale – RAW - and he cut them, arranged them, and carried them to church.

Later, we had to get them for him... he would try to tell us where to cut because his hands could not manage to cut through the hard stems. And later, we even had him tell us where he wanted them to be placed in the arrangement. He would not give it up. When he was wheelchair bound, he would have us take him to the church hall so he could instruct the others to make the VBS stuff.

So, if he had a GOOD DAY, a well meaning friend would say something stupid, like, "Well, I bet you are glad THAT crud is over" or like "Glad you are your old self again." They did not have a clue.

Maybe when YOU hear stupid stuff like the lady at the beach, it is NOT that you want them to feel SORRY for you. You just want them to UNDERSTAND. You want them to be EDUCATED about RA.

You, Mrs., have 5 kids at home! You are NOT a "gimmee stuff princess.” You do NOT want sympathy - just understanding as Gil did.

He just wanted it to be OK if he was not the same as before and if he had to back off some things. Rather than, "I guess you are tired of doing the flowers... or the VBS... or anything." Like he was glad to get rid of it. He HATED to give up ANYTHING.

What did you wish people knew?

Adding to that, I believe, is the frustration of the cavalier attitude and responses of those with NO CLUE where RA has taken a person. The road it has forced you to travel and I believe THAT is the - well, maybe even hurtful part. You shaved so "you must be all BETTER" as if a miraculous cure had taken place. Like when we get over a COLD, and feel great now. They never knew how laborious it was for him to shave, as it may be for you to wash and fix your hair, then hear, "OH, you did your hair. I am so glad you are all better."

You have been a big help to me by sharing so much about Gil.

Thank you, Kelly! Thank you for being transparent in this. I am transparent about my Life, my faith… everything except my health. I am always "FINE" … "GREAT,” etc. You make me realize that sometimes it is OK to say, when you responding to a friend, to someone who really cares, "I feel terrible", "I hurt", "I am having trouble breathing today."

Thank you, Dorothy, and I do feel like you understand.

That's why my prayer for you is constant: That God fills you with His peace and His strength so that each time you go through a tunnel, you can SEE His beacon lighting the way for you, leading you back to the mountain top. I somewhat love you, you know.

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.

Rheumatoid Arthritis Warrior on the Road

A Window into the Life of a Professional Patient

Tuesday morning I watched my clock tick up to the alarm time of 6 a.m. I hated to get out of bed early. It is my comfortable place. In years past, I eagerly shot up at that hour regularly to garden. But no longer.

These days, I don’t want to move because I will find out where it hurts. So I try to absorb the fluffiness of the feathers into myself. I want to save up the comfort and take it with me.

Tuesday, I dragged myself to the kitchen sink to wash my hair. It takes about an hour for me to wash and blow-dry, so I only do it 2 - 3 times per month. But I feel like a princess. Compared to when I remember I doing it every 6 months!

I was out the door at 7:39. Victory - only 5 minutes behind!

Uh-oh. Big problem. I forgot breakfast. No food, no Advil. I forgot my banana. My daughter brought me a Pop-Tart, just in case. Sometimes, it’s like she’s the mom. Too much sugar I tell her; only if I get desperate.

I have my first appointment of the day at 8 a.m. The physical therapist and I discuss a variety of topics and I try to tell her about my new blog. She’s trying to understand what Rheumatoid Arthritis is. I appreciate her effort.

My second appointment has been moved up to 9:45. So, I do the math and figure out there is time for a quick BOGO egg biscuit at McDonald’s. I force myself to eat it so that I can finally take my Advil and vitamins. (It’s just too hot and tasty, you know?)

We shoot down I-95. I’m early to the endocrinologist: just the usual, in and out. Weight, vitals, and meds list. Pulse high from coffee. She laughs about it.

No mention of RA. Is the nurse even curious why I can’t walk right? Weird. I know it’s all in my chart.

The next appointment is at 10:50: the good internist. Once again: weight, vitals, and meds list. Pulse much lower already. We laugh about the coffee again. New blood orders.

There are still errands to run and chores at home, but a load is lifted. I feel free as a bird. I won’t have another day like this one for at least a couple of weeks.

Fun Ways to Fight Rheumatoid Arthritis

Tickles, Trunks, and Nutrition

How do you make an elephant float?

Two scoops of ice cream, root beer, and an elephant.

Sorry, I know it’s corny. I’ve been telling that joke for almost 40 years and I still laugh. I’m incorrigible.

Well, if you’ve ever looked up Rheumatoid Arthritis on Google, you know there are lots of ridiculous recipes for a cure. There are foods to eat and foods to avoid. There are gloves and creams and sprays. Funny, fake, and preposterous cures abound – anything to get you to CLICK HERE NOW.

Once, we were visiting NASA on a “free entry for locals” day. A woman who saw me struggling to walk approached me with her cure: “I was like you just last month - until I drank acai juice.” She meant well, so I didn’t laugh in her face. But, I think my kids gave her a look.

A friend of mine did give me a large bottle of the juice. I was glad to give it a try. I’m not a cynic. I’m even willing to inject myself at home with chemo drugs and new-fangled manmade biologics – Hey, I’m willing to try anything within reason.

That brings us to my internist. He is a good doctor. And I know he cares because when he got a look at my numerous abnormal lab results, he had the vitamin talk with me. He gave me list of supplements he wants me to use. It’s not one more absurd attempt at a cure. He just knows that Rheumatoid Arthritis is out to destroy my entire body and he wants me to put every good weapon in my arsenal.

When I looked at the list of the supplements, I did the math. “That’s a lot of pills,” I thought. Then I started collecting the various bottles on the counter. “THAT’S IMPOSSIBLE,” I said. (It really is a huge number of pills because of the amount of each supplement that I need.)

You may know this one already: How do you eat an elephant?

One bite at a time, right?

So, I devised a plan for the vitamins and supplements. It has really helped. I got one of those large divided pill boxes people use for weekly pills. But, I don’t label it with the days of the week. I open the bottles and fill up the compartments. One is for fish oil, one is for calcium, one is for vitamin D, one for iron and so on. I can’t fit enough in there to get through a whole week, but you probably could.

Here is the rest of my method: I keep the box nearby and every time I eat a meal, I swallow some pills. If I eat a brownie at night with the kids, I swallow some pills. That takes care of about half of the pills for a day.

The other half of the pills, I take this way: chill some healthy juices that are considered a special treat. A couple of times a day, I pour out a big shot (six ounces or so) and swallow some pills. These have to be the ones that don’t cause much stomach upset, like Vitamin C or flax oil. Since the juice is a treat, the pills go down easier. Sometimes, I add healthy nuts or something like that. (As for juices, I recommend the V-8 fusion flavors or Welch’s purple.)

It’s not cheesecake, but it’s still a good thing.
How about one laugh for the road?
Why are elephants trumpeters?
Because it’s too hard to learn to play the piano.

Dr. Dolittle and Rheumatoid Arthritis

Who is Dr. Dolittle?

I saw this great article on Facebook about how much people with a chronic illness need doctors who will listen. Mainly people with RA read that page, I think. How could we get doctors to read it, I wonder?

Something funny occurred to me when I read it. I hope you get a smile out of it, too.

My kids were watching the old musical Dr. Dolittle. It’s the one with Rex Harrison and the cute pushme-pullyou animal which looks so much like one – no, two - of my mom’s alpacas. I know it’s old, but still delightful.

So Dr. Dolittle decides to become an animal doctor because he can’t get along with people, who he finds hypocritical and pretentious. He sings, “Why can’t people behave more like animals?” Of course, he means humble and honest and kind.

Well, later on, I was reading the article (When You Talk – Does Your Dr. Listen? Link below.) and this strange thing happened: Somehow the movie and the article merged into one. I had to laugh out loud. The song changed into, “Why can’t doctors behave more like people?” Of course I meant more humble and patient and kind.

I guess it was so funny because I still had the British accent and the music in my head. I could just hear Gubgub the pig squeal to get away from some rude and insensitive doctor the way he did in the movie when Dr. Dolittle said he’d consider eating ham again someday.

I know there are some very good doctors just as there are some good politicians and IRS agents. I don’t mean to offend any good doctors. Just the ones who might call themselves “Dr. Do Very Little.” So sorry. But, we are in pain, so we need to laugh every chance we get. Hope that’s ok.

The article really is great, seriously. The comment section is also quite useful. I would definitely consider printing a copy of it to share with friends – and your doctor.
Facebook article link