A Rheumatoid Arthritis Newsletter from RA Warrior

My Rheumatoid Arthritis newsletter is out!

I hope you got your copy of my newsletter that went out last night. If you didn’t, you can sign up on the Rheumatoid Arthritis Warrior Newsletter page and you’ll be sent one.

I always thought armadillos were cute. People from Texas would tell us stories about the silly animals. Isn’t it ridiculous how they curl up into a little ball when they are frightened?

That’s what I thought! Remember that story about the lawn and gardens that I planted after I got a front loader full of dirt? For months, I worked to improve that soil, making it earthworm worthy. At one point I tried to buy worms to improve the soil and I was told, “Work hard to make your soil excellent, and worms will materialize.” I did. And they did.

But someone else likes excellent soil – and the wonderful creatures that crawl through it. Armadillos actually stick their faces into the richest soil they can find. They uproot whatever is in the way: azaleas, lawns, or hedges – even swimming pools.

You might guess that I came to despise armadillos. By night, they’d come and dig up the work that I’d done that day. And by day, I’d buy more composted manure and azalea plants.

Eventually, I decided to protect my investment. We set out live traps. We began camping out on the back porch so we could chase the armadillos away with garden tools. There are some hilarious stories from that year. I have time to tell you this at least this: no matter what I did see, I never saw an armadillo curl up into a ball. They would rather charge at me and snort like pigs!

What can armadillos show us about a Rheumatoid Arthritis newsletter?

I’ve spent most of my time over the last several months working on a couple of projects like the Rheumatoid Arthritis newsletter. It’s been a lot like that armadillo year. Everything I do has to be redone. Everything that should take an hour takes 20 hours.

The RA is literally worse every day. “Press on” has been my motto for 27 years. It’s certainly being tested. But if a little pest like the armadillo can come back every night for a year and resist its urge to curl up in a ball and quit, so can I.

A new armadillo and finally – my first Rheumatoid Arthritis newsletter!

I live in a rurual area now. And I have RA. So there’s no manucured lawns or beds.

Yesterday, when I was out keeping some doctors in business, Roo looked out the window and yelled to Katie Beth, “Look Kitty, an animal!” As you can see from the pictures they got, the baby armadillo did dart around the yard avoiding them, but no curling up in fear. Me neither.

Comparisons with Chronic Illness

A need for comparison of chronic illness

Did you ever know anyone who has to make comparisons with chronic illness? They are always more sick and get less sympathy. They have more extreme side effects and less support…

Chronic illness is just like other things – some people just need to compare. It’s like they have a need to win something. I doubt there really is a sickest award for a most pitiful story so I’d gladly let that person have “more RA”- or whatever else – than I have.

Aren’t comparisons with chronic illness silly?

Comparisons with chronic illness are actually pretty silly. What proof is there that one person has more pain? And what good would it do someone to triumph?

But for some people it seems very important. One person I know actually wants to prove she can endure more serious medical problems than I have with less medical attention. Is she trying to prove she’s stronger? What would she win?

Kristin Wigg of SNL (Saturday Night Live) captures perfectly the lady who always has more of everything than everyone else. Her exaggerating will crack you up. If you’re like me, you’ll imagine that special someone who you know and enjoy the sweetest revenge of all – laughter.

Maybe after the video, you can imagine Kristin doing Penelope as a patient: “You think you have insomnia? I haven’t slept in five years. Treatments? I’ve tried 400 types with no results at all. Except that I actually died from the side effects. They resuscitated me. It was the Queen of England who gave me mouth to mouth. You think you have swelling? My little toe was the size of a pregnant whale…”

Win a T-shirt Dealing with Rheumatoid Arthritis!

Dealing with Rheumatoid Arthritis like Wonder Woman

I don’t know about you, but usually feel more like Mighty Mouse than Wonder Woman when it comes to dealing with Rheumatoid Arthritis. RA kicks me in the butt every day. Somehow, by not backing down, I feel I’m still in the ring.

This week I was telling my daughter about the Wonder Woman I grew up watching. Of course she did not have to deal with Rheumatoid Arthritis, but look at the ways she battled. Her golden lasso forced everyone to tell the truth. Truth is a major part of our battle too. We want the truth told about RA in the press! And wouldn’t it be great to wrap the Lasso of Truth around RA and force it to tell us the truth about a cure?

What I couldn’t do with Wonder Woman’s agility and speed? And an invisible airplane! My imagination wandered so far I decided to take my own alter ego, the warrior avatar and give her a Wonder Woman makeover. So, after many hours in the photoshop beautyshop, here she is! You can get her on an RA T-shirt right now at this link.

Still dealing with… Rheumatoid Arthritis and Woman’s Day

Can you believe it’s been only 2 weeks since I published the Woman’s Day video? I have no idea how many letters or emails or faxes have been sent. My own letters have not received a reply yet. Please watch the video and pass it on by reposting it, emailing it, or linking to it. If you feel the same way as I do about dealing with Rheumatoid Arthritis not being a picnic in the park, please consider sending Woman’s Day your opinion, too. To read more or watch the video now, click here: Woman’s Day Rheumatoid Arthritis Article: a Video Appeal.

How to win a T-shirt or stuff dealing with RA

You could win a Rheumatoid Arthritis the t-shirt of your choice from RAWarrior

Change your Facebook or Twitter profile picture to the new Wonder Woman Warrior logo for at least three days during the contest – OR – post this link about the contest as your status on Facebook or Twitter – OR – on your own blog. And then let me know! Each action is worth 1 entry.
You must remember to tell me that you are entering the contest! You can use a comment, message, Tweet, or email.
Once you have already entered the contest, you can earn two extra entries by commenting anywhere on the blog or by signing in as a Friend of the site on the sidebar.

So, if you did everything, you’d have a total of 5 chances entered. Roo and I will be very busy cutting up paper and writing names! Good luck to everyone!

If you don’t wear T-Shirts, I’ll be happy to substitute an apron or water bottle. There’s plenty of guy-appropriate gear, so we are not leaving you men out! There are sizes up to 3X or 5X in several shirts and we try hard to make everybody happy!

Looking at a Rheumatoid Arthritis Flare Up with a Smile

See what a Rheumatoid Arthritis flare up plus a little creativity can produce

There was a treat in my email box last night. Young freelance writer Brooke Windsor wrote up this clever verse about her Rheumatoid Arthritis flare. It gives cool meaning to “grin and bear it.” Brooke’s writing touched me and made smile and I’m so glad she is letting me share it with you.

Dear Kelly,

I just recently discovered your site, and I wanted to let you know how much it has helped me… I am currently having one of the worst flares I’ve ever had and even typing this note is a bit too much. However, after having a good cry about having to cut my shirt off in order to take a shower since my shoulder was so swollen I couldn’t get out of it myself, I remembered the idea of laughing at this “inconvenience” from all the funny articles on your site since it really is a laugh or be miserable kind of world for rheumatoid arthritis patients. I took it upon myself to make my own funny of my bad flare by taking an hour to type up this little joke. I thought you might like it as it really did make me smile once I finished. Again, thank you so much for your website. I really need to know there are others out there going through the same thing as me on days like this.

-Brooke Windsor

You know it’s a bad Rheumatoid Arthritis flare up when…

Funny Rheumatoid Arthritis Remedies

When it comes to some Rheumatoid Arthritis remedies we can only laugh

In the last few days, I’ve received some great advice for my Rheumatoid Arthritis. It’s great to have a disease that is so easily cured by so many inexpensive and unexpected methods. What a lucky girl I am to have them arrive daily in my email, blog comments, and Facebook page.

Last week’s most interesting Rheumatoid Arthritis remedies were miracle gemstones, an anti-gravity machine for hanging upside-down by my feet in, and infrared rays to –well, I’m not sure how to describe what they do. Maybe you can figure it out. Here’s what they told me: “The small piece of material I would like to send you contains a natural, non-toxic, environmentally friendly, GREEN blend of natural minerals that once embedded into any material such as foam, plastic, textiles, coatings, etc., produces Far Infrared Rays that have the same wavelength of animals and people… You can put it any of your sore joints either directly on the skin or even on top of your clothing. It doesn’t matter.”

So far this week, there have been 3 different juices and some green lipped mussel lipid.

Loving offers of Rheumatoid Arthritis remedies

Edited to protect privacy, here is an example of an email this week about Rheumatoid Arthritis remedies:

Anyway, I have a well meaning friend who keeps finding all kinds of natural juices and cures. XXX sent me info on juices and pills containing glucosamine and chondroitin, each of course claiming to cure you or make you feel better in 7 days. I’ll try anything, but I’m also a skeptic when it comes to these quick fixes … What has your research shown as far as other helps other than meds for the effects of RA?

My reply, in part:

Your friend is wrong, even though she may love you dearly. I would definitely promote an RA cure like that to you with my whole heart. I have been there with well meaning friends & I have even drunk the juice to make them happy.

Yes, it’s all quite amusing. Or awkward when the offer is from a loved one. But, it’s also sad when you think of people who are deceived into parting with their money or delaying treatment for Rheumatoid Arthritis.

Tell us your funniest Rheumatoid Arthritis remedies

What was the funniest Rheumatoid Arthritis remedy someone suggested to you? Until I started this site, I had no idea that there is still so much snake oil?

What if Rheumatoid Arthritis Patients Wrote a Dear Doctor Letter?

Silly Fantasy for Rheumatoid Arthritis Patients

What if we could say whatever we think to a doctor? Sometimes, I imagine what it would be like to write the doctor a letter. Here is my imaginary letter.

Some Rheumatoid Arthritis Patient Secrets

Dear Doctor,

Well, I’ve been looking forward to our appointment next week. It’s been several months. I hope you are doing well.

When I come in, you don’t usually have much time to talk. There are always more things I wish I had told you, so I thought it might help if we discuss a couple things ahead of time.

I haven’t been getting any better. To tell the truth, the RA seems to be worse all the time. I take my medicines as prescribed, but I’m not sure how much they help me.

Should I be getting better? Things in my life are getting really behind. All the time, I require more help and I’m starting to worry how bad it will get.

When you examine me, pulling and pinching each joint is pretty painful, but I guess it has to be done. If you ever want to save time, you can ask me which ones give me the most trouble. I promise I’ll tell the truth.

If it’s okay, I want to let you know I’ve had some trouble in the lab. The technician pulls my arm up hard by the elbow. She tells me to keep it like that, but my shoulder just can’t do it. She also wants my elbow completely straight. No can do. She gets pretty mad about that. Sometimes, I feel like she’s trying to prove a point with me. Does she know anything about RA? I never complain, but whenever I go to the lab, I leave in worse shape.

There’s one more thing. Sometimes, you interrupt me, saying things like: “Oh, everyone has that” or “Well, my joints do that too.” Most of my life was lived without this constant RA flare, so I do have something to compare it to. I feel like I’ve lived on both sides of the fence, so I’m asking you to trust me when I tell you what it’s like to be the Rheumatoid Arthritis patient.

Going to doctor appointments is not something I do to get attention. I do have friends and family to tell my troubles to. I’m so glad to have found a wonderful doctor such as you, but please understand: I have a full life with plenty of more interesting things in it than going to the doctor. I don’t spend my time going to the doctor unless I really need to go. So, when I come in, I really just need your help.

Sincerely,

A Rheumatoid Arthritis patient

Rheumatoid Arthritis Doctors’ Interviews

If kissing turns frogs into princes, what about heaters and RA doctors?

A friend of mine held a job interview yesterday. She did not hire him. It didn’t sound like he really wanted to be her doctor anyway.

It reminded me of this frog picture from last summer. If princesses have to kiss frogs until they find a prince, what do patients have to do to find a quality RA doctor?

There are all kinds of Rheumatoid Arthritis doctors…

Perhaps you’ve met the RA doctor who never looks you in the eye, Doctor Laptop. Maybe you know Dr. Dolittle, the RA doctor who seems to care very little and do even less to treat you as a person.

There was this Nurse Secret Agent. She slipped into the room quickly as soon as Dr. Dolittle was out of sight. She whispered to us not to tell the doctor her secret. She pulled a bent-up laminated sheet out of her shirt.

“Don’t tell him I’m doing this. His patients don’t get help with those medicines. This is a natural cure for the condition. Don’t let him see this.”

Rheumatoid Arthritis doctors and dressing for success

What a surprise last year when I met Doc Space Heater, a rheumatologist.

It was a whole day event. My son loaded my medical records and films into the ‘Burban. My hair got the blow out I can manage a couple of times a month. I put on a suit and made the long ride to interview Doc Heater.

That morning, Doc Space Heater’s nurse had a run-in with the microwave that led to a little fire in the break room. To clear the smoke from the office, the manager turned the air conditioning on full blast. By the time we arrived, it was about 50 degrees in the office.

After an hour, a nurse placed us in an exam room which was even colder. She explained about the fire, asked me to undress, and handed over a large paper napkin to use to cover myself. Of course I had planned to conduct the interview in my suit. Aren’t you supposed to dress for success?

Twenty minutes later, the nurse brought in a small heater to warm up the tiny room. We thanked her warmly – considering we were shivering.

Forty-five minutes after I took off my suit, Doc Space opened the door. Doc picked up the space heater off the floor and threw it across the room into a wall. The interview went downhill from there. Definitely akin to kissing a frog.

Moral to the story: Sometimes, you have to laugh to keep from crying. Other times, it takes distance of time before things can be funny. The sooner you can laugh the better. Think of it as a harmless revenge.

Postblog: Of course I know there are good doctors, too. I often mention the “good GP” and my great new rheumy doc. This is a true story about looking for a new doctor.

More typical posts than this:

Is Laughter a Real Rheumatoid Arthritis Medicine?

New significance to RA, medicine, and laughter

If you’ve been on the blog more than five minutes, you know I love to laugh. When I was a kid, I remember Dick Van Dyke singing that with Julie Andrews in Mary Poppins. When they laughed, a funny thing happened: they floated “higher than air.”

Maybe you’ve heard it said: Laughter is good medicine. Did you know that actually comes from the Bible? I can hardly believe the second part! “A joyful heart is good medicine, But a broken spirit dries up the bones,” Proverbs 17:22. Gives new meaning to “funny bone.”

“Lol” found to be Rheumatoid Arthritis medicine

Last week, I was doing this pain in the neck pain threshold research. I saw this “mirthful laughter” study. I think “mirthful” means you have to “lol” / laugh out loud. Apparently laughing really hard is even better for you – just like Dick and Julie said!

Inflammatory cytokines were measured in the blood of RA’ers before and after watching Rakugo. Rakugo is a type of Japanese standup comedy in which the person sits. But is still funny. As long as you speak Japanese.

Anyway, there was a measurable effect to the laughter on the cytokines of the RA patients tested. It is interesting that they divided the patients into two groups: those with easier to control RA and those they called the “difficult-to-control” (recalcitrant Rheumatoid Arthritis). The way in which laughter affected RA patients’ inflammatory chemistry was dependent upon their RA disease activity. “The difficult-to-control RA group is under more stress than the easily controlled RA group and mirthful laughter can be used as a means to improve mental condition.”

It was not all good though. Seems those with tough to control RA have it tough all the way around. Certain pro-inflammatory cytokines were increased with mirthful laughter. Still, I feel like my four year old watching Blue’s Clues shouting “A clue. A clue. I found a clue.” Why would this tough-type RA respond differently to laughter? Would that help us know why recalcitrant RA responds differently to treatment?

Bonus: We spent about an hour watching Rakugo videos looking for a funny one to post here. All of the ones in English were painfully unfunny. However, this baby (below) will make you laugh out loud. The little guy gives the “evil eye” whenever his parents ask. I need this kid.

Note: You can view the Mary Poppins “I love to laugh,” on YouTube here. To view the RA / mirthful laughter study here, click “download” and the pdf file will open. See every laughter post on RA Warrior here.