To Tell the Truth: Will the Real Rheumatoid Arthritis Please Stand Up?

Swimming with dragons

This RA Warrior is a dragon slayer. There is one particular dragon who is my arch enemy. It is the mythical version of Rheumatoid Arthritis.

I imagine that as it deceives people about Rheumatoid Arthritis, there is less concern about whether a cure is needed for the real RA. The mythical version of RA is probably not a stranger to you. However, let’s warn any newbies among us about what it looks like.

The mythical version of Rheumatoid Arthritis is a few aches and pains mixed in with a large amount of lethargy. It also includes some stupidity about medical treatments and how easy it is too cure anything at all today. Finally, the mythical RA tends to infect people who have no ambition or self esteem, but try to get attention and assistance by acting sick.

I know none of you has the mythical version of Rheumatoid Arthritis. I don’t either. That’s the reason so many of us reacted the way we did to the Woman’s Day article this summer which treated RA a bit lightly. It seemed that the writer was confused about the real RA.

Fighting the misperceptions about Rheumatoid Arthritis is one front of our war because the mythical versions of Rheumatoid Arthritis just don’t raise much concern for a cure. There is no need to spend lots of money doing research to cure whining. And meanwhile, since people don’t know the truth about the real RA, they may not afford RA’ers the assistance that they require one on one.

This RA Warrior is also athletic. However, the real Rheumatoid Arthritis makes it fairly impossible to express that characteristic. But, today, I got to do it a little.

I got to swim for a few minutes. I absolutely love to swim. I taught myself to swim when I was 18 years old in order to conquer my fear of water. (I had been pulled out of the water by a lifeguard when I was 10.)

One day, I swam 110 laps in my mom’s pool. Of course, a lap was only 7 strokes. I would swim every day of my life if I were able.

Today, I swam a few light laps until my shoulders and elbows could not take any more. Then, I rested in warm sunshine. When I knew it was my last chance, I got back in the water to see if I could do just a bit more. My hip would not let me kick, so I swam a couple of laps pulling my left leg as a dead weight. It was my choice. I was ecstatically happy to do that.

Why?

Because I am not lazy or lethargic. I am not stupid, unmotivated, or whiny. I have the real RA which fights my athletic desires. And I fight back like a warrior. And always doing the best that I can is who I really am.

And, by the way, if you ever see me sitting on a sofa with my feet on a pillow, I am still doing the same thing: I am doing the best that I can do. But, you can bet I’d rather be swimming.

(If you have not read the fantastic comments posted by RA Warriors on the Woman’s Day website, you should! Here is a link. I just went there again and it reminded me that the readers of this blog are topnotch!)

Want more Warrior?

Inspiring story: A Summer Read for Rheumatoid Arthritis Warriors!

Or for a smile: Laughter as a Weapon Against Rheumatoid Arthritis

The Harsh Journey of Rheumatoid Arthritis Requires a Pillow

Rheumatoid Arthritis Warrior Road Trip

The blog will be a bit different for the next few days. I will have to be on the road. But I hope you will be able to come with me – at least in spirit.

I plan to disclose more about the trip over the next couple of days. I will be sharing the driving with my bff. We will be bringing some daughters, too. There will be plenty of estrogen in the car. And chocolate.

The last few days have been very difficult physically. The Rheumatoid Arthritis in my neck (cervical spine) has been very inflamed. At times, I can hardly hold up my head and it brings blinding headaches with it. Also, knees and ankles.

I have been amazed at how God has helped me to get packed anyway. The girls have done a lot of it for me, but I still did much more than I thought I could. I was running on NSAIDs and adrenaline.

The adrenaline even let us catch a glimpse of the old me for a few moments:

I had bought this travel pillow a few months back. I frequently use it in the car, but still with the original plastic bag on it. I kept hoping to someday sew a pillowcase for it, which would make it a lot more comfortable. Of course, I had given up that for now since my hands hurt far too much to cut fabric.

Today, I was cleaning out a compartment in the ‘Burban and found a couple of fat quarters I had planned to return. That’s quilter-speak for a pre-cut section of material. Like skirt steak for sewers.

I opened them up and suddenly realized that 1 plus 1 equals 2! And two fat quarters obviously equals one travel pillowcase. With no cutting.

This evening, I followed my impulse and made my nice smooth case with French seams and a deep hem. It will be a good thing to have. I was glad to see that plastic bag go in the trash.

As useless as those fat quarters had seemed as they waited to be returned, they were exactly what I needed. I just had not noticed that. That is okay; they were willing to wait for me. (Lord, is there anything else you want to show me? Please make me ready to see.)

PB (post blog)
I will check in with ya’ll soon from the road. If you would like to see more frequent updates, please check in with the Facebook page; I usually make more frequent posts there. Or follow me on Twitter. Bon voyage.

Need more?
Why every voice about RA counts: The Invisible World of Rheumatoid Arthritis Speaks

Curious: What is the difference between Osteoarthritis and Rheumatoid Arthritis?

RA Tips: Practicing Preventative First Aid for RA

Good Living with Rheumatoid Arthritis book review

Can this bookcover claim be upheld? “Good Living with Rheumatoid Arthritis Is More Possible Now Than Ever Before!”

I’ve been putting off this book review post because I am afraid I’ll sound negative. Why do I feel like I am obligated to praise the book because it is published by the Arthritis Foundation? Is it a sin for an RA-er to criticize the Arthritis Foundation?

Whoever wrote the cover certainly flattered the writers. Wish I agreed. Here is what they claim is inside:

Front cover: “Find the Tools You Need to Ease Pain, Reduce Joint Damage, Improve Mobility, Relieve Stress.”

Back cover: “In this book you’ll discover… Easy ways to improve your flexibility, reduce pain and stiffness, and manage stress.”

Here’s what I did not like:

The tone is impractical: I felt like the writers have not met anyone living with moderate to severe Rheumatoid Arthritis (a large percentage of RA-ers).

Some information is already outdated since science moves fast and the internet keeps up better than books can.

They gave too much print to the notion that Rheumatoid Arthritis pain is subjective and can be controlled by techniques like mental imagery and self hypnosis.

They presented an unrealistic view of exercise, even using the dreaded phrase “Use it or lose it.”

Have you ever heard of “rheumatoid personality”? Some doctors believe it is the source of Rheumatoid Arthritis pain, would you believe?

There’s more, but I want to keep this short. So, just one more thing: it’s printed on really heavy paper, so it’s too heavy to hold in our hands.

Here’s what I did like:

They expect doctors to talk to patients like real persons, even providing forms to prepare for appointments. However, they do not come with any guarantee of doctor cooperation.

They approve of the use of narcotics for Rheumatoid Arthritis pain which is not controlled in other ways. This has been a controversial topic over the years. Perhaps that is related to some of the concepts discussed in the last section. What is controversial about pain control? Nothing, if the alleged pain is seen as actual pain.

I infer that they envision RA-ers as managers of their own RA treatment programs. Although there is much resistance to this idea in the medical community also, it is the only legitimate basis to “Good living with Rheumatoid Arthritis.”

The book includes a few short vignettes from actual RA-ers. This is probably the best part. It is almost like getting a little page from a blog. They are more realistic. One nurse even tells how RA made her blind in one eye and affected the adjacent ear.

Of course, I also like the promises on the book cover. Too bad they could not really deliver on them. They should not feel bad about that; “Easy” answers for RA would be impossible to deliver. They do not exist. That is not the fault of the text writers. They just need to find more accurate cover designers.

All I can say is, I wouldn’t want to be a lawyer defending those cover claims in court.

Post-Blog: If the comments on exercise were startling to you, please read this post on Exercise. And coming soon: Should RA-ers Exercise? Part 2. If the comments that RA is a serious disease sounded surprising, you might read Can Rheumatoid Arthritis Kill You? If you are adjusting to life with RA, I suggest Shifting Sand.

Rheumatoid Arthritis Warrior on the Road, part 2: FIRED!

Here is another chapter in my life as a professional patient.

The other day I set out on one of my regular pilgrimage days. There are several of these days every month. This time our first medical appointment was the ophthalmologist. My son and I made it to the car by 8:30. It is hard to move first thing in the morning.

When we arrived, there was the typical new patient pack to fill out for my son. (I was an established patient.) I used own my own pen because it is light enough for me to hold. As I filled out the first 2 blanks, I was tickled with myself. My handwriting looked familiar. It looked like my own handwriting. I said, “Hey my hand must be doing okay today. I haven’t seen that handwriting for a while.” It made me smile.

That lasted less than a minute. My fingers got tired and started to slack off. That lasted the next minute. Then, my fingers hurt too much to write. So, I scrawled as little as possible as quickly as possible. I got my son to fill out part and turn it in for me.

Soon we were off to the back for lots of tests with funny contraptions. What is that thing we looked in to view a hot air balloon? The girl said she could see how I see and measure my prescription automatically.

I got to wear a trial pair of custom-made specs. Like the look? I told her they were lovely, but I couldn’t buy them because they were just too heavy. Too much stress on my neck.
They are really nice at that office, but after 2 1/2 hours, we were eager to leave.

On the road again… a list of blood tests and a much overdue TB test.

However, I can never resist the pit stops that are “right on the way anyway,” like the Sam’s club which had finally opened in our county. Usually, we go to Sam’s an hour away from home. Who could resist a Sam’s club “on the way”? I do buy milk and eggs and juice for 7, after all.

At Sam’s, my son does most of the lifting. However, it is not easy to be idle. Stubbornly, I lift a gallon of milk and shout out to him to catch it as it falls. He’s seen that before, so he’s fast on his feet. Nice save, son!

My hip, my knees, and my elbows are not enough. My feet are screaming by now. I keep telling my son, we have GOT to hurry and get out of here! It has gotten to the point where I am wondering how I’ll make it to the car.

Yummy rotisserie chicken samples remind us it’s lunchtime. Mmmm.

Checkout. Membership card. Double-take. “Is this YOU?”

“Yes,” I say.

“Nice picture. Pretty hair. Doesn’t look like you.”

I pretend I did not hear, “Hmm?”

“The hair was very pretty. You don’t look like that anymore.”

I pretend I am not hurt. “It is raining. I put my hair up to keep it dry.”

I lean on my son as I shuffle and drag my feet to the car. We are trying to fit the milks into the cooler when we realize: EGGS! I fall into my seat as he unloads the rest.

Heroically, the young man goes back inside with my cute-hair card and some cash to pick up a couple cartons of eggs. I pull off my sneakers and moan loudly since no one can hear me. I relish the comfortable seat of my Suburban.

The door-keeper was not sympathetic to a teenage boy running back in without his mom. Oh, well. On with the shoes. Slow drag to the door. Door-keeper smiles, “We can let you use the wheelchair.”

“Thanks, but I’ll manage.”

“Go ahead really, you shouldn’t feel bad. Your problem is only temporary. It’s not like you’ll need it for long.”

“Huh?” I breathed. “No,” I smiled. I wonder whether I should say more. “This will probably get worse, not better.”

I got straight into a checkout line while he ran off for the eggs.

One more thing is right on the way to the lab and home. Friend just out of the hospital. We’ll stop for only a moment since I have food in the car.

The doorknob is hard. It’s locked. Knocking is painful. The step up is hard. Several minutes of standing to make small talk. I look for something to lean upon. God, help me. My elbow, my feet, my knees are killing me. I breathe very deeply and shift my weight. My hip!
Finally, struggling to the car. Shoes off. How will I ever make it home?

Fifteen minutes. Home at last. I gather up as much as possible: papers, books, shoes, cup, purse, keys... “Momma stop! You don’t have to carry all that.”

“I know, but I can’t come back to take any more,” I protest, staggering into the house. Collapse upon the sofa. Absolute exhaustion. Finally at rest, I become conscious of how many places I hurt. Every joint is sore.

Breathe relief to be finished. “I’m sorry, hunny. We never got lunch! It is 2 o’clock.”

But, I am wrong; I did not finish! I realize I never made it to the lab!

I guess I am not a very good professional patient anymore. Do you think I can get fired?

You might also enjoy

RA Warrior on the Road, part 1

So Glad Your Rheumatoid Arthritis is Cured

How RA Creates Makeovers and Bag Ladies

Should Rheumatoid Arthritis Patients Exercise?

Can we talk about exercise?

There is an elephant in the room. Not a cute and helpful one like Horton. It is one of those proverbial elephants no one wants to address. It’s a big and annoying issue that won’t go away, yet everyone tries to ignore.

I do not fancy myself an elephant tamer. However, I have a constant urge to state the unspoken. So, let’s get this out in the open.

Exercise is a touchy subject in the world of Rheumatoid Arthritis. Proponents of exercise strongly advocate it. No one I know actually opposes exercise, but it does raise several questions. I wonder why I do not hear them asked.
Early in 2006, when I began to suspect that I had RA, I began to read research articles about it. I was leery of internet Quackdom, so I limited myself to medical universities / hospitals like Cleveland Clinic, Mayo, and Johns Hopkins. Soon, I learned to expand to other reputable websites like WebMd and About.com. I just wanted the legitimate information, not fairy-world cures.

I read about protecting my joints by not doing things that caused pain or stress. That sounded very important to me, so I printed off lots of pages about it. Later, when I began to hear how some RA-ers are pressured to exercise, it struck me as odd. The two ideas are in direct conflict. I cannot protect my inflamed joints from use at the same time that I am using them to exercise.
I read about every theory I could find to explain the causes of Rheumatoid Arthritis. I did not read any which pointed to laziness or lack of exercise as a reason for RA. I am sorry to be blunt, but if sloth did not cause my RA, then workouts will not cure it.

My doctors have prescribed vitamins, chemo shots, newfangled funky Biologic drugs, rest, anti-inflammatory medicines and even a high Omega-3 diet to attempt to gain control of my RA. Funny, they have not prescribed exercise. Why not?

It would have been an appropriate prescription if I had come into the office with one of many other conditions. But, I was disabled by RA, not idleness. Some people are truly disabled by RA. And they cannot exercise for either fun or strength.

There are others who have RA, but who are not disabled. Many have times between flares, however brief, when they can safely exercise. And a few other RA-ers actually have only a small number of joints that are affected. Of course, they can exercise using the unaffected joints.

I do not feel comfortable asserting this position. But, frankly, I am never comfortable anymore. I am in pain. It’s not endearing or attractive to say so, but it’s true.

I am very uncomfortable to sound like I am opposing something as wonderful as exercise. I half expect to be stoned. But, of course I am not arguing with exercise.

I am arguing with the preposterous proposition that if RA-ers would just exercise, they would feel better or get well. That is so absurd that I can’t think anyone really believes it. If they do, I am willing to walk in their shoes. Can they stand in mine?

I wish that RA-ers would not have to ever defend themselves about exercise. We did not get Rheumatoid Arthritis because we were less active; we became less active because we have RA.

Rheumatoid Arthritis Requires Disease Treatment and Symptom Treatment

There is a difference between disease control and pain control for Rheumatoid Arthritis.

There is no cure for RA. You probably gathered that from yesterday’s blog. However, there are medications which can curb many of the effects of RA by actually cutting it back.

These are the medicines referred to as DMARDs: disease modifying anti-rheumatic drugs. The most common are methotrexate and Plaquenil. There are others, but those are used the most today because they are considered the most safe and effective.

Biologics like Humira, Remicade, and Enbrel are also used to attack the disease. Think of them as a newer subgroup of DMARDs. For a very few people, DMARDs bring on a thorough remission of the Rheumatoid Arthritis.

If you have taken them, though, you know that they are not a cure. They reduce the disease by attacking the immune cells which attack us. But those immune cells continue to multiply and fight back. That’s one reason that I say this is like war.

The disease has its weapons – various B and T cells and the cytokines they produce. And you have yours – medications, nutrition, and various therapies. If we had a cure for Rheumatoid Arthritis, then we could fire that ONE weapon and be done with it. Someday we’ll be there.

Meanwhile, back at the ranch…

We sit in our tank and fire our big DMARD guns at the RA. And we cut the enemy down to a more manageable size. But, then we still have to deal with what I call the “leftovers” – the many symptoms of Rheumatoid Arthritis which are left after the DMARD has worked its magic.

To fight those, we use “extra” medications which include the following:

Steroids, which reduce inflammation quite effectively;

NSAIDs, which also reduce inflammation and pain, but less effectively;

Various other types of pain relievers or pain blockers, including narcotics;

Treatments, therapies, and medications for every other extra-articular symptom of RA such as drops for dry eyes, iron for anemia, heart disease medications, anti-depressants, or medications for relaxation and sleep, yoga, and massage therapy.

As warriors against Rheumatoid Arthritis, we usually try to take as little total medication as we can take – and still be able to live our lives fully. Most RA patients live with lots of “leftover” pain.

Why is that?

There are 3 reasons for this:

1) We want to protect our organs from permanent damage due to long term use of too much medication.

2) We want to avoid side effects of medications, which often compound some symptoms of the RA.

3) We do not like being judged as weak by others because we are dependent upon medication.

It can be hard when you are deciding whether to take more medicine so that you can get out of bed or whether you want to save your stomach, liver, or kidneys. It’s like a game of Risk.

It is war. So we need to be strategic. If we are going to use any “big guns,” then they should be the ones which can do the most damage to the enemy.

If we were shopping, we’d ask: What will give me the most bang for my buck? Usually, that means giving priority to taking whatever combination of DMARDs will provide us the most disease control possible. Then, after that, we decide how we’ll go after the leftovers. We have to - so that we can function.

It’s not a perfect strategy, but it will do until the cavalry comes – with the cure.

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.

Baloney About Rheumatoid Arthritis

How Do You Spell Baloney?

“Baloney,” I muttered to myself the first time I saw an ad for a Rheumatoid Arthritis drug. My jaw would have dropped – if I could have opened it. Who am I kidding? If I could have, I would have liked to throw something at the TV or at least the producer of that ridiculous commercial.

I don’t think they are still running it. A woman sits on the beach watching children play. And since she is supposed to have RA, she sits massaging her knee firmly with her hands.

Here is what I was thinking:

1) How did she get so close to the shore? Did she walk on that knee through the sand? There is no one else around. Did she carry that lawn chair herself?

2) If her knee hurts, why is she rubbing it so hard? Rheumatoid Arthritis makes joints so tender that it is painful even to brush against them lightly.

3) What person with Rheumatoid Arthritis can rub anything firmly like that? Aren’t the hands supposed to be the first to go? (Well, with me it was the feet; I like to do things the hard way.)

It was not a realistic depiction of RA. So that same company has a new ad series. Instead, a woman goes dancing through her day – either managing her huge dog with ease or enjoying fine dining with her romantic interest. Her life is bliss. Thanks to the drug. Baloney.

How about the magazine ads? Every time I open a magazine, there is an ad for a Rheumatoid Arthritis drug which pictures the hands of a senior citizen. Hey, I hope I grow old, too, in spite of RA. But, most people get RA between the ages of 35 and 50. And we are having a hard time getting the message out about that.

Why can’t they use a young hand in just one ad? I plan to ask them and I hope you will, too. Why can’t one ad ever show a man with Rheumatoid Arthritis? At least twenty percent of RA patients are men. Don’t you think people would react strongly to see how RA can destroy a man in the prime of his life? Why is there not ever a single child? Now that would evoke some concern. That’s right; there are at least 3 types of RA which make up Juvenile Rheumatoid Arthritis.

For that matter, why can’t they ever once use a real RA patient in an ad, instead of the bouncy actress? I bet there are thousands of RA patients who would do it for free just to get the truth out. Take that back - we need the money – our treatments are really costly.

That reminds me: when I first went on biologics, my RA doctor told me how angry she is that they even HAVE ads for these drugs. Her opinion: “If you have RA, your doctor knows about the biologics. And if you do not have RA, no one is going to prescribe them for you. What are those ads FOR? It is a waste of money which could be used on research or helping patients get the most expensive medicine in the world, which they need to live.”

At least those ads are for a drug which actually treats arthritis. The one that really aggravates me lately says this: “For many people with arthritis, not treating is not an option.” This medicine is not an arthritis treatment. It is a temporary pain reliever. This ad confuses people about what arthritis is. If they mean Osteoarthritis, they should say so. Perhaps they do not so that they can sell more of the drug. That is the point of advertising, right?

How about this one? What are they claiming their drug can do? A picture of barbells has the caption: “Arthritic joints need strong muscles to protect them. Tylenol Arthritis Pain.”

If they want to advertise, I say fine. I like a free market. Could they at least promote truth about the reality of Rheumatoid Arthritis at the same time? Wouldn’t that build trust, which is what strengthens sales in the end?

Beats the baloney they serve up now.

Emapathy for Rheumatoid Arthritis

Zero to 60 in 15 Seconds Flat

How can you describe how your Rheumatoid Arthritis makes you feel in 15 seconds flat? We lament the fact that there is a wide world out there that just “doesn’t get it.” My own world is the same as yours. My own family and friends and doctors have a hard time.

There is no Stepford Wives extreme makeover for understanding RA. The folks who don’t have Rheumatoid Arthritis do not understand what it is like to walk – that is limp – in our shoes. And they never will entirely.

As I discussed last week in Transparency and the Wall, there must be a balance between our willingness to be honest about our health and our accepting the fact that some people will choose to live in denial. We are neither able nor responsible to climb the rock wall of denial that some folks throw up in our faces. Besides, repelling is not an approved sport for RA-ers.

So, let’s assume you have a willing audience to hear your description. What can you say fast – before you lose ‘em?

There are three categories to describe your physical condition: Strength, Stamina, and Pain.

Strength

I like to describe strength as what it takes to lift a backpack. Someone with Rheumatoid Arthritis must carry an extra backpack which cannot be put down.

Try to describe what is in your backpack right now. Is it full of concrete blocks or just a load of laundry? Remember, even if it is only a magazine, that could get pretty heavy if you could never put it down.

Stamina

When you have RA, it seems like the world is no longer a level playing field. It’s like all of life is climbing a mountain. You have to struggle and climb your way to accomplish any small thing. Some days can be grueling like the Alps and others may be only challenging like the Appalachian Trail. And, every morning, we begin again at the bottom of the mountain.

Try to say how steep you feel the mountain is. And where are you on it, right now?

Pain

Pain is the defining symptom of RA. If your audience has never experienced severe pain, this will not be easy. However, if he has ever had any severe pain, ask him to recall that pain and label it as “five”. (Some examples may include kidney stones, slipped disc, torn rotator cuff, being shot with a bullet, or natural childbirth).

Then, rate your own pain right now with a number between zero and five. It would be good at this point to also name the places that hurt the worst.

You may end up using all three word pictures. Or, maybe you only need one. I’ll bet, after this gets you going, you come up with even more on of your own.

Here is my example from today:

Aw. Thank you for asking. Today, my backpack has several library books in it. I’m climbing a small grassy knoll today because I decided to take the easy road. Have made it over halfway up the hill. However, going to Wal-Mart was more like plowing through an avalanche. I am hurting in about 15 joints and I rate it a 3.5.

It was so kind of you to inquire. ; -D

Two Kinds of Site Reactions about RA

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

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

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

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

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

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

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

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

Rheumatoid Arthritis left my glass half-full

I knew the glass was half-full.

Two months ago, I could do about half of what I could do before RA. The dr.s kept saying I should be getting even better. I really wanted that, too. The doses of my meds were as high as they could go: Humira weekly (that's a double dose); and methotrexate 25mcg by injection (much more is absorbed by injection). Maxed out at those, my functionality was at about 50%.

So, when the dr. said lets try something else, I was game. Well, we went to Enbrel, which works almost the same as Humira. But, Humira is a long acting 2-week dose and Enbrel is a weekly dose. I asked the dr. and two pharmacists: Are we essentially cutting my medicine in half? They all said, "Not really."

Every time I inject myself, I pray that it will help me get well. And then I thank God that I have the medicine and remember those who have had RA without these strong drugs to help them survive it. It really does help me remain hopeful - not to mention how that helps me stick myself.

Well hopefulness aside, it's been over a month. I am 5 shots into the Enbrel regimen, and it's not looking good. Every week is worse. I am productive only about 2-3 days per week now - sort of.

There is a lot more pain, of course. There is stiffness and weakness. There is fever, nausea, and lack of appetite. But the worst are the Sjogren's syndrome and the fatigue. Sometimes, I literally cannot move. I cannot lift up my head.

There are no words to accurately describe how desperate it feels. The tiredness is so extreme. I feel like I'm falling down a hole in a cartoon; I keep sliding downward and there is not a bottom. Gravity is so strong.

Now, I am kicking myself for changing the prescription to begin with, of course. I knew the glass was half-full. I was grateful for that. What will this cost me? All of the suffering I could describe is nothing at all compared to knowing the unseen damage that it is causing within my tendons and joints and my eyes and my nerves.

But that's not the worst. The worst thing about my half-full glass having spilled is the time that is gone. Calendar pages fly by and my life is going on without me. Ouch.

I want my half-full glass back. And next time, I will put a sippy cup lid on it.