I’ll give it my best shot, but I’d love to hear your replies too. Remember, the name of the game is not to be nasty. But hopefully, we can still make it clear that RA is a serious disease with arthritis as its most well-known symptom.

1. Aren’t you feeling better yet?
   Some days are better than others. I know where you can donate to help find a cure.
2. You’re not old enough to have arthritis.
   No one of any age should have to suffer with a disease like this, especially the children who have it. I guess I’m blessed for the years I grew up without it.
3. Oh, I know; me too.
   I’m sorry if you don’t feel well. But if your doctor didn’t prescribe chemotherapy, I doubt you have the same diagnosis.
4. Exercise would really help you feel better.
   Regular exercise didn’t keep me from getting sick. I really miss the things I can’t do anymore, especially tennis, running, and swimming.
5. You don’t look swollen, sick, or ______
   Thank you.
6. Have you tried counseling? Maybe you’re depressed.
   Part of the reason I’m not depressed may be that I sought counseling after receiving this serious diagnosis. It helped me to accept it.
7. Why do you walk so funny?
   I’m not sure; it may be the damage to my hips or knees. But all of the joints in my ankles and toes hurt so much today, I can’t be sure.
8. No, it’s not heavy. Here, hold this.
   That might not be a good idea; I do drop things.
9. Have you tried the blue stuff?
   I’ve tried almost every color of medicine you’ve heard of. If your blue stuff successfully treated RA, it would cost a lot more.
10. You’re feeling achy. / The aches & pains of arthritis.
    Usually, RA pain is sharp so patients often compare it to an ice pick or a knife.
11. Why didn’t you try glucosamine (or Omega3 or gluten-free…) before you tried that medication?
    I actually do take some of those supplements, but they don’t treat my RA.
12. Just drink this juice. (Or eat blueberries…)
    I would have to drink several gallons of that juice day to get the temporary anti-inflammatory effect of taking an Advil. I take four Advil every few hours.  
13. Is that your handicapped parking tag?
    Yes, sometimes I can walk to get into a store, but I have a hard time making it back to the car.
14. You just need to lose some weight. (Or gain weight!)
    Thin people and heavy people both suffer from RA. It is a wasting disease, so eating well to be a healthy weight is a real concern, but it won’t make the disease less harmful.
15. I’m glad you’re better now.
    I wish you could see how I really feel, but not as much as I wish I really were better now.
16. At least it’s not cancer. It’s not like it will kill you.
    Some cancers kill more quickly than RA, but RA has a similar mortality rate to other cancers.
17. I read about a woman who cured hers with…vitamin supplements, antibiotics…
    I don’t know what her illness was, but I’m glad she feels better.
18. You just have a low tolerance to pain.
    I actually have a high tolerance for pain, but sometimes I have less tolerance for ignorance about this serious illness.
19. My Grandmother had that.
    I’m sorry. At what age did you lose her? Some of my relatives died of RA also.
20. I used Tylenol arthritis and mine went away
    Good. If it was RA, it will be back. Unfortunately.

Recommended reading

• Is That Your Final Answer? …or Replying to Misconceptions
• Laura’s CVS Commercial with Kelly’s CVS and the “a” Word
• Joint Effort of Rheum Patients Will Outshine Progressing RA
• Perseverance in Fighting Rheumatoid Arthritis

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When I started blogging, I had dreams of this website. But it could take forever to learn enough about “code” to manage it…

We’ll save the rest for another day, but do you realize rawarrior.com has at least 630 pages? We have come SO far! Almost all of it has been created by me with trial and error and with my lovely assistant, Katie Beth (now almost 20).

How many times we were up half the night trying to fix the “broken” website? I’m trying not to remember.

We’ve been so busy passing milestones that we spend little time celebrating them! I read an article this weekend by an authority about how to blog. (I was searching for answers to why the website crashed, but more on that in a moment…) The writer said to spend 20 percent of your time writing and the other 80 percent of the time promoting your content. How else would anyone know about it? If you work for hours or days on an article, you want it to be read, right?

This is one of the things I seem to #fail at all the time. Ack! I probably spend 20 minutes promoting for every 800 hours writing. So people don’t realize all that I’m doing. Even regular readers say:

• Kelly, have you ever thought of making a video?
• You know what we need? An RA patient foundation!!
• Really, I never knew you had t-shirts!
• What, you have a Facebook page?

Um, yeah.

Why think about these things today?

• We passed 100 RA Onset Stories recently! To read 12 new stories, start at the bottom of this page – click here! And there are many more waiting in my laptop.
• The website has been crashing the past week and we’ve fixed everything we can find. Our server says rawarrior.com is just too big and needs to buy more space. Again.
• About once a year, we make changes to the website so things are faster or easier to find. As I’m able, it’s that time again. It may take a while since I have to fit it in with other things.

Finally, I want to respond to “Don’t you have time to…?” questions. It probably deserves a whole post. But I really don’t have time. I just know I’m working harder than I can remember. Anyone know where to find the other 80% of time the expert thinks we have?

Y’know, I truly enjoy my children at every stage, including those few glorious weeks when I had FOUR teenagers! In the same way, the website goes through growing pains, but it’s still home. Um, yeah.

Love,
Kelly

PS: Are you signed up to get the newsletter? It’s kind of a monthly answer to “What have you been up to, Kel?” where I highlight a few don’t miss things.

Very important recent posts you may have missed while we were crashing:

• New evidence that RA is a systemic disease that does not begin in the joints.
• 7 Useful things to know about imaging like MRI’s or x-rays
• Getting to the bottom of new remission headlines
• Can people with RA get “sausage finger” or toes?

Edit: 8 a.m. 4/9/12. Added photo and link to rheum4us.org.

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Customer service: Can you ask the doctor to prescribe another option? Mother: No, methotrexate is a generic drug, there is not another version.

CS: Isn’t there an alternative to metrex-re-erer-eate? Mother: No, this is considered the background treatment for the disease. Ninety-five percent of Rheumatoid Arthritis patients are prescribed meth-o-trex-ate.

CS: Your diagnosis is arthritis? You need injections for arthritis? Mother: No. It’s a disease. I have to have these injections as treatment. And they are required to continue with my other treatment as well.

CS: But it is arthritis, right? Mother: No. It’s not.

Mother: Look, it doesn’t matter. This is the about the cheapest treatment for this disease available. And it’s almost universally prescribed. I’ve taken it for years and you need to cover it.

CS: We don’t have to cover it because you inject it. We don’t cover things you inject at home.

Mother: It’s no one’s business how my doctor and I decide I’ll deliver it. It’s always been covered. If it were insulin, would you cover it?

CS: But that’s a treatment for diabetes. Do you have diabetes?

Mother: No, but that’s exactly my point. RA is a disease like diabetes. And methotrexate is the treatment.

Mother made several other calls and the insurance company covered subsequent methotrexate prescriptions. Fast forward two years.

Mother gets most of her prescriptions at CVS because Target hasn’t sent any coupons lately and… because the CVS pharmacist always seems willing and able to help figure out solutions. Whether it’s devising a plan for easier methotrexate injections, getting a priority antibiotic filled immediately, or ordering methotrexate to be sure it’s available during the shortage, this CVS pharmacy has provided exceptional service.

Last week, the insurance company rejected the methotrexate prescription again – after two years of paying for it. The CVS pharmacist spent time on the phone arguing on behalf of Mother without success. But the pharmacist did not give up trying to help. Until the insurance company can again be persuaded that RA is a disease for which methotrexate is the standard treatment, the pharmacist sold the methotrexate with a discount. ~THE END~

I don’t know about you, but usually when I need something from a pharmacy, it’s because I’m sick. Which means something’s not right. Usually I’m in pain. Or worried about myself or one of my children. There have been countless times when I needed the pharmacy at a stressful time. Every time I’ve needed assistance, my local CVS pharmacist has been helpful and cheerful. That generous attitude filters down to staff as well. When I saw the Laura’s CVS commercial recently, I couldn’t wait to talk about Kelly’s CVS!

Postblog: This story really happened to me! People who work for insurance companies or medical facilities can have the same problems that employers, neighbors, and disability judges do with comprehending that RA is a disease and not “a type of arthritis.”

Recommended reading

• 3 Reasons to Stop Saying “Complications of Rheumatoid Arthritis”
• Methotrexate Injections for Rheumatoid Arthritis
• Methotrexate Injections for Rheumatoid Arthritis, part 2: Needles
• We Refuse to Be Mislabeled: Updating Rheumatoid Arthritis (RA) to Rheumatoid Autoimmune Disease (RAD)

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I already knew why over the counter supplements (OTC) are not considered as reliably dosed as prescriptions – because OTC products aren’t subject to the same quality control for measurement of ingredients as prescription products. Folic acid was just one more part of a whole program that started that day. No questions asked.

Doubling down on folic acid with higher methotrexate doses

When the methotrexate dose climbed to 25 mg and the Humira shot became a weekly occurrence, I constantly got small skin infections. Every little scratch became inflamed. When I plucked my eyebrows, they got sore and angry.

So, I told Dr. KBC and we doubled the folic acid dose to 2 mg per day. It worked like magic. I asked whether I might ever take more and doc was not sure. Two milligrams was okay, but no more.

My folic acid prescription journey

A couple of years later, Dr. Smart wrote the same scripts, no questions asked. I read more about folic acid for the blog or to answer other patients’ questions, but my own dose was unquestioned and unchanged for years. I learned that patients take different doses. And that some patients weren’t given any at all. Of course, they usually felt pretty sick and sought out my blog as a result…

When I lost Dr. Smart, I kept my refillable 90 day prescriptions. Until they expired…
Dr. Good GP came to the rescue, submitting an identical folic acid prescription…
Mail order maintenance pharmacy dropped the ball, losing the prescription…
Kelly bought OTC folic acid at Walmart to tide herself over…

Worse than useless: OTC folic acid

For over two months, I took handfuls of OTC folic acid – and was more sick to my stomach from methotrexate than I’d ever been. I entertained all kinds of possibilities about what was turning my digestive system black and white and red all over – like an elephant joke – -

An ant and an elephant were going on a motorbike. They had an accident. The elephant was seriously hurt on the head, but the ant was not. Why?
Because the ant was wearing a helmet!

Finally, the prescription folic acid arrived! Within a few days, it worked like magic. I proved that the advice I’d given to patients a hundred times was positively right: ask your doctor about a folic acid prescription, just in case. Folic acid is the bike helmet for my stomach with methotrexate!

If your methotrexate dose makes you feel sick, talk to your doctor.

“A consensus for folic acid or folinic acid dosing or administration does not exist, and the decision to initiate supplementation is physician-dependent.”

Some bonus jokes to start your week with a smile!

What’s gray and comes in a red and white can?
Campbell’s cream of elephant soup.

What’s gray and comes in a bottle?
Liquid elephant.

What’s gray, black, and white?
Sister Mary Elephant.

What is beautiful, gray and wears glass slippers?
Cinderelephant.

Recommended reading

• Rheumatoid Arthritis and Hair Loss
• Folic Acid with Methotrexate: the Debate
• The 1st Dose of Methotrexate for Rheumatoid Arthritis: 15 Questions
• Part 6: Checklist for Moderating Methotrexate Side Effects in RA

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It’s hard to explain RA to anyone who hasn’t lived it. Have you ever had a sprained ankle or tennis elbow or carpel tunnel? Maybe a jammed finger or a broken toe? And then used it anyway? Living with RA is kind of like that – only for many of us, every joint is affected.

If I try to tell someone about this, I usually have to focus just as much on ignoring the eye-roll as I do on ignoring the pain. Just because I don’t say anything doesn’t mean I don’t notice the skepticism. And we can tell when you think we are exaggerating. After conversations with thousands of RA patients, I can tell you that we are almost always doing the opposite.

We can also tell when people do believe and care – like several beautiful souls I’ve met who said, “Tell me more about RA.” There was even a Mayo employee met me saying, with, “Well, everyone has arthritis.” After I explained the difference between “arthritis” and Rheumatoid Disease (which almost always has inflammatory arthritis as one of the symptoms), he said, “Oh! I’m sorry. I didn’t know.” A good step.

If we try to explain that meds don’t help much, then we recognize skepticism, even from doctors. “Are you sure about your diagnosis? You don’t look like you have RA…” Yes.

Sometimes, I try to give an illustration about how hard it is to function in a group of healthy people. Sometimes people with a disability, can feel invisible. Other times it’s hard because the disability is invisible. Like most things, this makes me laugh now that time has passed.

Real-life example 1: Bio break

At break time, a hundred women want to use the ladies room. I dread the walk. Women fly around me in the hallway. By the time I get there, the line is out the door. I wait in the line until it reaches the door. I ask, “Maybe I’ll sit in this chair until it’s my turn. Can I keep my place in line?” No one answers. I try to move the chair out from the counter. The chair falls over & I’m down there with it, trying to figure it out. No one moves to help.

Real example 2: Elevator at the airport

Have you noticed the elevator is always further away than the escalator? We press the button & wait between sets of elevators. When a door opens, 10 people rush in before I can take 2 steps in that direction. Can I also say that I’m terrified of elevator doors now – because I‘m not able rush passed them or push hard to make them re-open? So if we’re riding elevators together, could I please go through the doors first?

How do you do with crowd management?

Recommended reading

• Rheumatoid Arthritis Symptoms Not Alleviated by Disease Treatment
• Hear My RA Interview on KISS FM!
• 20 Rheumatoid Arthritis Patient Facts I learned from RA Patients
• Rheumatoid Arthritis and Football Season

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It was a day filled with misconceptions about RA, and it really bothered me; but I didn’t figure out why until this morning. I hate being misunderstood and when it’s about RA, it bothers me more because I feel like I’m judged as a failure, a bad mother, an un-giving person, lazy, or dishonest. Just once, it can make me feel like I got kicked in the gut. Yesterday, I had that experience repeatedly.

Katie Beth and I were discussing a brief encounter with a doctor and we started laughing about how great it could be if I could put the truth of all of this into the book called it Is That Your Final Answer? Then we started laughing about how some game show lines fit life with RA. Laughing always helps.

But the day was much longer, and in the evening, I was finally at home in bed with a sheet over my head, in too much emotional pain to write and too much physical pain to do anything else.

Do you ever have these encounters where you know someone completely misunderstands? Do you just let it go unanswered, for whatever reason? I’m trying to come up with answers I could have used that day – unspoken answers?

Vignette 1: Is that your final answer?

Nurse: “My best friend has RA, but she doesn’t take any of these medicines.”

Me: “Does it disable her? That helps people decide. I mean when I went on the drugs, I couldn’t put my arms up at all to -”

Nurse: “She has no choice. She is a single mom. She works and does everything for him in spite of RA because she puts him first. He’s in high school, but she wants him to have everything… (5 minutes more)”

Answer UNSPOKEN: “People with RA really do get to a point when they can’t do some things. We still put our children first. It’s not our choice to have a disability either.”

Vignette 2: You are the weakest link

Doc: “Twenty percent of women with inflammatory arthritis actually have a chronic pain syndrome instead of active disease. It’s just pain, right?”

Me: “No, my joints are also stiff, swollen, grinding, weaken –”

Doc: “But how much do you exercise?”

Me: “Well I do as much as I can, but I can’t do a lot of things now. I used to lift 50lb. bags, but my joints-”

Doc: “How do you sleep?”

Me: “Like a rock.”

Doc: “But you don’t feel rested, right?”

Me: “No, morning is the best time of my day.”

Doc: “Have you tried Tramadol or Cymbalta?”

UNSPOKEN Answer:  “I have a fever every day. I have a fever right now in this cold office for 3½ hours. But you aren’t taking my temperature.  You haven’t ever examined my joints or read my chart. You seem to have a preconceived notion that you’re trying to fit me into. Apparently you can’t fathom this, but I have actually tried to do all of the things I say I can’t do. I didn’t just lie there and say ‘I can’t.’ I found out that I can’t because I tried, and I can’t. Perhaps the reason is that RA can inflame tendons and cause sudden weakness, stiffness, or instability. Whatever the reason is, I’ve gotten letters from hundreds of patients who experience the same things as me. And even if I were the only one, it’s still true.”

Vignette 3: Let’s make a deal!

Identity withheld: “She has RA too. She can put up the tents and sleep on the ground. And still do everything.”

Me: “I don’t know anything about her or if medicine helps her-”

IW: “Her daughter has it too and she’s ok.”

UNSPOKEN answer: “Let’s make a deal. I won’t assume you’re being insensitive if you don’t assume I’m being lazy.”

Deal or No Deal

Seriously, like most people with RA, I’d like someone to offer me a deal. Don’t most of us take whatever’s behind Door Number 3 or Curtain Number 2 (like medicines we’ve never tried before!) because even though it’s unknown, it must be better than what we have? If we wait hours every month at the pharmacy or medical appointments, when they call our name, it feels like an announcer on The Price is Right saying, “Kelly Young, Come on down!” Personally, I’d buy a vowel or a lifeline or anything that could possibly help me figure out this puzzle…

I’m ready to say, “I’ll take ‘SOLUTIONS’ for 1000, Alex”

How can someone judge whether I’m truly weak or just lazy from across a room? Or if they know nothing about my life? If I say I’m trying my hardest, how does anyone know that I’m not? Is living life with RA a sentence to living life doubted? I truly hope not, but I’ve been accused on both sides with occasional comments that hint: “Do you expect us to believe you’re really sick and still blog?” to others who insist: “If you were willing to try, you could exercise and feel better.”

I don’t know; I’m just doing my best and assuming the same of everyone else with RA. We really need someone to give us the benefit of the doubt.

How about you? Any UNSPOKEN ANSWERS?

Recommended reading

• 20 Things Not to Say to a Rheumatoid Arthritis Patient
• Health Blogging: Complications and Blessings
• Don’t Take Those Meds for RA or Juvenile Arthritis

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None of us love a needle stick, but some technicians do it so well, you can hardly feel it. Last week, a woman took several vials of blood without even asking me to squeeze a damn rubber ball. It was the first time a nurse remembered I have RA and adjusted her procedure! Thank you! (It helps that I have great big veins but I’m used to the eye roll because I won’t squeeze the ball hard enough. Don’t Like.)

I’d waited hour at the lab when they registered me as another Kelly Young. A receptionist asked 3 times, “But aren’t you Kelly M. Young?” “No.” When she realized I was sure, she apologized. Another first for me. I hated the wasted time, but isn’t it much better when we can act like we’re all just people… WHO WILL BY THE WAY, ALL BE PATIENTS ONE DAY?
1. Hate: Toilets low enough to be a toddler potty seat.
2. Love: Healthcare workers who smile.
3. Hate: Lab chairs so high up we are supposed to climb up on them. Lab chairs = high chairs. Again with the toddler thing.
4. Love: Doctors & nurses who answer our questions respectfully.
5. Hate: Doors with the spring tightened so that we can’t open them. Especially if we need to come out of a room.
6. Love: Anyone who says, “I’m sorry.”
7. Hate: Medical assistants who insist they must know more about my disease than I do just because they work in a medical facility.
8. Love: Employees who remember our names. Or at least believe us when we tell them.
9. Hate: Dirty bathrooms. Dirty sinks. Dirty anything. Can we use more of high-priced healthcare to fight illness by fighting germs?
10.Love: I want to bake muffins (if I could anymore) for anyone in healthcare who uses a gentle touch. Even a gentle handshake. Why is that so rare?

What about you?

I’ll bet you have some answers that are even funnier than mine – or more significant to your care. What do you wish a healthcare facility administrator would change TODAY?

Recent happy surprises for RA Warrior!

1. RA Warrior was quoted in this Prepared Patient Forum piece “Accommodations for Chronic Conditions.”
2. RA Warrior was featured in Best Practices in Healthcare Social Media “Chair of Cheer” an honor not usually assigned to patients.
3. RA Warrior was featured on the Swaglove Blog in “How t-shirts helped create a community” telling how t-shirts are more than tools for awareness – they help create a sense of community so we know we’re not alone.

Recommended reading:

• 10 Dumb Questions About an MRI for Rheumatoid Arthritis
• All the posts on this blog tagged “Humor.”
• 20 Tips for Managing Your Rheumatoid Arthritis Treatment
• A recent story by a reader that tells a story of trying to change the heart of one medical receptionist.

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The Boogie Man Is Not on Social Media!

One reason many give for avoiding social media is fear. There are several risks or negative possibilities that people imagine will befall them. While the possibility of negative consequences is real, it’s usually rare. Still there is a perception that a Boogie Man exists. He’s not under the bed like he was when we were six, but somewhere in Social Media Land.

Like the one under a child’s bed, the Social Media Boogie Man is actually an image that emerges based on a collection of indistinct fears. Fears can often be dispelled with more information. While a six year old won’t get up, turn on the light, and look under the bed, there are many ways that we can do that. We can examine social media and prepare ourselves to use it to improve healthcare, driving away the Boogie Man.

One suggestion I’ve given healthcare professionals who are anxious is to observe a new platform or community for a brief time before fully participating. As you ease into it, people in online communities usually like giving advice and will gladly explain the lingo that’s being used or update you about scheduled events. Here are some other specific ways you can prepare to use social media successfully.

Please do try to…

1. Be knowledgeable: Post useful, reliable information. Clever is cute, but you want to do more than attract attention; you want to build others’ confidence in your posts.
2. Be good: Generous. Kind. Honest.
3. Be yourself: Use social media the same way you’d use the telephone, an email, or a walk in the park.

Some surprising principles:

1. Get off topic! People also love to talk about food, sports, or the weather. It’s okay to get off your healthcare topic so people can get to know you a little.
2. Get mad! It’s all right to show some passion or emotion. It helps others know you’re being sincere.
3. Mess up! Everyone makes mistakes anyway, so don’t think you have to wait until you can do this perfectly before you try.

Notice I did not say:

1. Be Mr. or Ms. Wonderful! Just be part of the conversation.
2. Be ever –present. You don’t have to reveal everything or be online all the time.
3. Practice medicine online. Most do not have that expectation of you anyway.

I hope this eases some pressure or lessens some fears about using social media. The Boogie Man may be around somewhere, but I haven’t spotted him on Social Media lately. Mostly, I’ve met a lot of real people who are passionate about learning from others and improving healthcare.

Recommended reading

• Who Are e-Patients? A Simple Explanation
• Patient Stories May Provide Real Help via Social Media
• Alice Goes to Jacksonville: Mayo Clinic Center for Social Media
• The Fake Patient (fPatient) & Patient Engagement on Drug Companies’ Sites
• Living with (RA) Rheum Disease Is Already Multitasking

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1) “Do you want your rubber duck?”

The favorite rubber duck has a squeaker which lets water in. Squeezing the water out of that duck brings severe hand pain. Not quite as much as the softer Thomas squeaker toys. (And water also hides in the duck so it has to be squeezed for two days.)

2) “I can do it myself.”

The worst RA example is not a jar. For me, it’s window blinds. I have those faux wood blinds that are heavy and hard to stack. Every single time I wrap that cord around my hand and pull, I tell myself not to ever do that again.

3) “I can be there at 9 a.m.”

Not if I don’t get up by 5 a.m., I can’t. Why do I think I can wash my hair and get dressed in only two hours? Even though I’ve lost about a third of my hair since March, it takes longer every time.

4) “Fine thanks, and you?”

Occasionally, I get a letter or comment saying “I feel bad for others who suffer more than I do with RA. I can still do so much.” I think: I know; me too.

Meanwhile someone else says, “Why is your website full of people who can still run and ride a bike? I feel like I’m the only one like me.” I know; me too.

Whether it’s because of sub-types of the Rheumatoid itself or our genetic differences, our experiences with the disease differ greatly, even in the same patient over time.

If we can be honest, this is how RA is. And we can and should fight our hardest to overcome, but still… it is what it is.

It’s extremely frustrating to hear others talk about what they can do, assuming we can do it too, whether they have RA or not.

It’s hard to explain all this, and I suspect most of us don’t try to.

One of the harshest things, next to RA pain, is the assumption that we are somehow weak, lazy, exaggerating, or have a low pain tolerance.

So, instead of saying what it is, I say “I’m fine thanks” and save a lot of trouble.

5) “Why does it hurt so much?”

When I stay on ibuprofen and Lortab long enough to make a difference in the pain, it never fails: I start think I’m not very sick. Any more. Until I miss a dose. Then I’m mad.

6) “Is this considered swollen?”

When I was off of the methotrexate for a while, I had more swelling. Now, I sometimes forget what my joints looked like before RA. Until I try to put on shoes or a watch. A ring would not even enter my mind.

Personal note: To make a long story short, my spine is a pain. I’ll try to clearly explain what I mean by that soon. If I seem to be absent, it’s because lately I’ve spent lots of time unable to sit or type. Staring at the ceiling is a special challenge, but today I need to push myself extra hard. Please send prayers and support as I drive away by 5 a.m. to take Roo for his hernia surgery. It should be a routine procedure and we’re praying it’s simple and easy.

Edit 12/29/11: Roo’s surgery was in August when this post was first published. It went very well and he’s doing great! Since I got new coupons this week, I updated the coupon below to the current offer.

One final thing: I received a coupon this week to share with you. You can use it on anything from the RA Warrior t-shirt store here.

What: New Year’s Coupons
Who: You and everyone you share it with.
Coupon Code: NewYear$10
Discount: $10 off all orders over $50.00!
Coupon Code: NewYear$25
Discount: $25 off subtotal of $100.00
Disclaimer: Please enter coupon code NewYear$10 or NewYear$25 before completing checkout. Discount is applied to the base price and does not include taxes, or additional charges. This offer may not be combined with other offers. Coupons valid from 12/27/2011 to 12/31/2011 11:59 pm Mountain Time.
Dates: December 27 to December 31.

Recommended reading

• Severe Rheumatoid Arthritis Versus Mild Rheumatoid Arthritis
• A Rheum Full of Contradictions
• Rheumatoid Arthritis Disease May Be the Scarlet RA

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A funny thing happened on way to see The Two Towers

When having a discussion about RA the other day, I suddenly had this vision of Gollum from The Lord of the Rings in my head. (I’m sure it had nothing to do with the fact that we were headed that night to see the director’s cut of The Two Towers at our local theater.) If you’re unfamiliar with The Lord of the Rings, Gollum is a creature who was once a human-like hobbit, but his one-time possession of “The Ring” and all-consuming lust for getting it back eventually left him as little more than a goblin-like skeleton of a being. At one point in the movie, The Two Towers, Gollum is arguing with himself over the trustworthiness of the hobbits he’s with, and I picture him saying this in his raspy, whiny voice:

“Sneaky little hobbitses RA. Wicked, tricksy, false!”

I don’t know about you, but I think those words about Rheumatoid Arthritis quite often. RA is sneaky. You may feel fine one day, and wake up the next day hardly able to get out of bed. Symptoms come on suddenly, often when you’re least expecting it. It comes on without warning, yet somehow slinks to the shadows during doctor’s visits (the physician presence effect?). It may feel bad, but not look bad. You may have symptoms, but not the blood work to verify your diagnoses. It’s sneaky all right.

RA is very “tricksy” too.

I think the “tricksiest” part about Rheumatoid Arthritis is that it seldom looks or acts consistently. It’s different for each person, and it’s different within each person day to day or over time. Read all of the RA onset stories and you’ll notice that no two of them are alike. Different symptoms manifest in different patients. There is a broad range in the severity of the disease and how quickly it progresses. Some treatments work great for some people with RA; different treatments work well for other patients; some patients aren’t helped by any current treatments. Sometimes moving makes you feel better; sometime moving makes you feel worse. For some, the symptoms come and go, in a series of flares and lulls without any apparent rhyme or reason. For others, it’s a constant state of flare, with no real relief in sight. Some people can identify triggers for their flares, but again, it’s not the same for everybody.

It’s no wonder RA is so difficult to diagnose and treat. Until we truly have an understanding of this disease (or possibly group of diseases?) it will be impossible to appropriately treat each case. My hope is that, through research, we can come to understand the “tricksy” nature of Rheumatoid Arthritis and learn to beat it at its own “trickses.”

What “trickses” has Rheumatoid Arthritis been playing on you lately?

Recommended reading

• A Fairy Tale for Rheumatoid Arthritis Warriors
• Encountering Signs of Rheumatoid Arthritis: A Modern Princess and the Pea
• My Quest for Answers to Questions About Rheumatoid Arthritis
• Airport, Storms, and DMV: April Fool’s!

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