Harvest time

Now that's a slew o'tomatoes. Envision spaghetti sauce ...

Now that's a slew o'tomatoes. Envision spaghetti sauce ...

Decided to wander out to the vegetable garden this afternoon. Last time I was out there, about a week ago, there were two — count ‘em — two ripe tomatoes ready to pick off the thick, sprawling vines. The rest were all green. It hasn’t been the greatest summer for tomatoes; most of May and June were overcast and cool, so nothing much happened, garden-wise. By mid-July it was finally growing nicely, but many of the veggies we’d planted had died off. No eggplants, no red, yellow or orange bell peppers. Sigh. August got nice and hot. More growth, but no fruit. Same for most of September.

So you can imagine my surprise when I discovered RIPE TOMATOES everywhere. There were these gigantic heirloom toms and a whole slew of small romas (my favorites). I picked two basketsful and heh, here they are, ready to eat or make into spaghetti sauce immediately. I’m going to call my sweet next door neighbor and offer her as many as she’d like. Tommorow I’ll get busy making savory sauce to freeze.

And there are scads more tomatoes out there, nearly ready to pick. I figure by Tuesday I’ll have this many to work with again. It’s supposed to be chilly and rain buckets on Tuesday and Wednesday (yay!!). We sure need that rain. It’s time.

I also spent most of the afternoon out raking leaves and carting dry straw to the chicken pen and down beneath the red oak tree. The chickens like the straw for bedding and bugs; the stuff under the tree I spread out hoping to discourage foxtail weeds next spring. Now my wrists and hands are yelling at me, but my daughter Cary and almost-son-in-law, Matt,  and I will be going out again in a little bit to cover the firewood piles with tarps so the wood stays dry when the rain comes. Matt,  the love, has already brought a good load of sweet, dry firewood inside so we can stoke up the woodstove when it gets chilly and damp in a couple of days.

Then I’m making chicken soup. I love autumn.

Update: I changed my mind. I didn’t make chicken soup. I made fresh spaghetti sauce with four big chopped up tomatoes, a big handful of chopped pimiento olives, basil, oregano, garlic, a bit of salt and a couple of generous grinds of pepper. Spooned it over whole wheat spaghetti noodles cooked al dente and dusted shredded romano cheese over the top. Oh, my. yummmm.

Disability: Mind over matter

Steven Kuusisto and CorkyOne of the blogs I’ve come to deeply respect is Planet of the Blind, written by Stephen Kuusisto, who has been “blind” since he was born prematurely in the mid-1950s.

I put the word blind into quotes because Kuusisto does have some vision. It’s just enough to allow him to see colors and shapes, “a kalaidoscope” in his words; and after a recent breakthrough surgery, he can now see more of the world than he’s ever been able to before, though he is still “legally” blind.

But Kuusisto’s vision transends the physical. His figurative vision is as sharp, clear and breathtakingly beautiful as a bell.

Kuusisto’s disability is a result of too much oxygen pumped into his hospital incubator. At the time doctors thought they were doing the right thing for tiny babies born weeks before the end of the third trimester by enriching the air they breathed. But for Kuusisto and many thousands of other children, the additional oxygen sometimes caused blindness.

His story strikes a singular chord in my heart. I was also born many weeks prematurely, and only the year after he was. But the use of extra oxygen had recently been stopped as a routine practice because doctors had finally discovered the damage it could potentially do to a premature infant’s delicate and developing eyes.

Kuusisto is a scholar, a poet, a writer, and a professor of creative writing and disability studies at the University of Iowa. His imagination and insight, the incredible images he creates with words and his deep honesty and real passion for the rights of the disabled are both eye-opening and inspiring. He “sees” the world in ways most of us never have — and perhaps never will. He’s an activist and advocate, and I’m glad he’s here to give all of us a voice and a map toward positive change.

Here’s one of Stephen Kuusisto’s poems, taken from his book of poetry, Only Bread, Only Light:

Terra Incognita

When I walked in the yard
Before sunrise,
I made my way among patches of dew —
Those constellations on the darkened grass.

The webs drifted like anemones,
And I thought of lifting them
As if they were skeins of brilliant yarn
That I could give to my  mother
Who’d keep them
Until we knew what to make.

I pictured a shirt —
How I’d pull it over my head
And vanish in the sudden light.

Whoa. So much for disability, eh? I’m inspired and challenged by his talent, his art, his tireless work on behalf of others, and his joy. You can visit Kuusisto’s blog by clicking on “Planet of the Blind” in the blogroll to the right, or by clicking right here.

Wise words

Rheumatoid Arthritis Guy has got to be the best bloggers about this disease I’ve read yet. His observations, his attitude, his humanity and empathy all work together to make his writing compelling, educational and — delightfully — humorous. Laughter is truly great medicine.

Today he’s talking about “disability” — what it used to mean to him and what it means to him now, after several years of living with rheuma. Here’s a taste:

When I was diagnosed with rheumatoid arthritis, I clashed against the label of “disability”. (Having just been diagnosed, this was not the only thing I was fighting against.) For all of the grief that I sometimes give others about comments suggesting that I am too young to have arthritis, I found myself doing the exact same thing to myself. “I am only in my 30’s…I am too young to have a disabling disease.” Silly me, as if disability had anything to do with age! So, along with many other aspects of my illness, I shelved any thoughts related to disability. My perception of a) who I was and b) what it meant to be disabled just did not match up in my head. (Never mind that I had completely lost the use of my left knee and was only able to walk short distances with the aid of my crutches.)

I was also diagnosed with rheuma when I was in my early 30s. I know exactly of which he speaks. Do hop over to his blog and read the rest. This is a young man with insight and wisdom beyond his years.

Slapped

“Ow!”

I’m sitting on my sofa, my laptop on my lap-desk. I shift to get more comfortable. Now the computer is too close – my elbows are sticking out. I stop typing, grasp the laptop and lift it up to move it back a little.

Although I’ve been typing for quite some time without pain, the slight weightarthrits flare up of the computer on the joints in my fingers make them feel like they’re being shoved rudely sideways inside my skin. I yelp and let go of the laptop. I stare at my fingers. They look the same as always. Of course.

“Ow!”

Last night. Supper time. My sweet son-in-law-to-be, Matt, has prepared a lovely rack of barbecued ribs, baked potatoes, green beans and toasty garlic bread for us (he’s a keeper, that young man). I pick up a knife to slice between two of the smaller ribs. I start to cut. Pain – instant, shocking – shoots through my knife hand. I yelp. Drop the knife. OK, I give. I ask Matt to cut my meat for me. He does it cheerfully, but I’m humiliated. I feel like a child.

Is this disability? While the pain in my hands is mostly mild today, it feels disabling even though it hasn’t really stopped me for long. Had I been alone at supper time last night, I could have gritted my teeth and cut my meat myself (or I’d have skipped the ribs altogether). Today I was able to move my laptop even though it hurt. So what’s the big deal?

See, that sudden, wrenching pain, even after years of dealing with it, always catches me by surprise. It’s like a slap out of nowhere, for no reason. It reminds me that I’m not right, that I have to be careful or I’ll get smacked again. It hurts. It makes me tentative about just doing.

And, it’s insidious. My apprehension builds up over time, under the surface, working quietly but treacherously just like the rheuma itself. Not only do I become tentative regarding how I use my hands, my mood shifts. I get grumbly, at least to myself. And I also start to fear that a larger, more severe flare in my hands (or whichever joint is “twinging”) is imminent.

Sometimes I’m right. Sometimes I’m not. I’m grateful when it doesn’t get worse, but the harm to my psyche has already been done. I’ve been cowed again. Slowed down. The smile has been wiped off my face, even if just for a moment. And I’ve been reminded again (as if I’d forgotten) that even when the rheuma isn’t so bad that I want to cut the offending limb off entirely, it’s doing its sneaky, silent work, slowly breaking down and ruining my joints. It has one goal: to truly disable me.

I talked with my mom on the phone this morning. She asked how I was, so I told her. My hands hurt. She asked, “isn’t that medicine you’re taking helping at all?” Yes, I said, the doctor says my sed rate is lower than it was. He says that means there’s not as much inflammation in my body as there was before, which in turn indicates that the drug is doing what it’s supposed to do, which is slow the progression of the disease and perhaps save me from disablement down the road.

What the drug doesn’t do is relieve the constant pain, whether it’s low grade, like now, or terrible, which it has been in the past and I know will be again. Maybe later today. I never know, really. It’s like limbo. And that constant reminder, that knowledge, that big pain is waiting in the wings eventually starts grinding me down. It affects how I make my plans for the day, for the week. It affects my mood. I do my best to grin and bear it, but sometimes my grins are more like clown masks. They don’t reflect how I’m really feeling because to show that would be to give in, to let the hurt, crying child I feel like down inside come out into the open.

I don’t tell my mom all of this, of course. I don’t want to worry her any more than she already is. She’s long familiar with my disease, though she doesn’t understand it very well. “Can’t you take something for the pain?” she asks.

Yes, I can. I can take Tylenol (which I have, today) and tramadol, which blunts mild to moderate pain (which I haven’t, yet). If the rheuma decides (yes, I think of it as a thinking, malevolent, sentient being) to gift me with a really severe, nasty flare, I have a bottle of Vicodin in my medicine cabinet. It helps some, but not as well as I’d like, and it comes with a dark price. It makes my brain floaty. Drowsy. I don’t dare drive in that condition. I don’t dare pick up a sharp knife for fear of cutting my fingers off by accident. I also dislike the after effect they have on me. I feel like I’m slow and foggy-brained for half a day after I take them.

But worst of all, even though they work the best to relieve the pain, opiates like Vicodin are addicting. We build up a resistance to them after a while, so we need increasingly higher doses or more powerful drugs in the same family to get the same effect.

That scares me. How will I cope with severe flares when opiates don’t work anymore for me? As a result of that fear, I take them as seldom as I can.

I know this post is whiney. It helps, though, to put my feelings about rheuma and its affects on me in writing. It’s a rant, I guess, and there’s some relief in ranting, even just to myself and the few people who happen to read this blog. If you’re reading this, at least you probably know exactly what I’m talking about. It’s nice to know that we’re not alone in battling this disease, isn’t it.

Mystery

 

AutumnMapleLeaves

Last night was rough. Hands bitched and moaned. My right ankle joined the chorus, as did both hip joints. I was too hot. Then I was too cold. I tossed and turned, trying to get comfortable, trying (with great sighing and grumbling) to fall into a deep, restful sleep.

No go.

When dawn finally arrived, I rolled out of bed stiff and sore, but relieved to be done with the battle, at least until bedtime again. I shivered. I’d sweated through my thin pajamas several times during the night; they were still a little damp. Jeez. I thought I was finished with menopause. I guess I was wrong. I pulled on my warm house robe, slid my griping feet into my old wool slippers, and padded into the kitchen to make a cup of coffee.

I’m on my second cuppa now. I’ve eaten a bowl of steaming-hot oatmeal jazzed up with cinnamon, a little brown sugar and a drizzle of evaporated milk. I’m finally warm and it seems I’ve finished with the “power surges” for now. When I’m done writing this I’m headed for a hot shower and clean, warm clothes.

Autumn has arrived about three weeks early here in my little part of Northern California. In spite of the chill – or really, because of it – I’m glad. I’ve always loved this time of year best no matter where in the world I’ve lived. I love the clear, slanty sunlight, the cold nights and the surprise of the first frost, the change in the trees from slightly worn-out green to brilliant yellow, orange and scarlet. I love the snap in the air and the chill on my cheeks, the breezes that pick up, carrying hints of ice in them, and an excuse to wear a sweater and fuzzy socks.

Fall energizes me. October is my birth month, so maybe that has something to do with it. But I don’t look forward to my birthdays anymore. When I reach the Big Day this month, I’ll be 53. One-half century plus three years.

It’s funny. When I hit the Big 5-0 it didn’t bother me much. It gave me pause, sure. Fifty years on Earth, I understood, gave me a slightly more nuanced take on the world than those younger than me. My children were grown. I’d lived through personal hard times and through troubles that affected the rest of the world as well. We hadn’t, after all, been vaporized or irradiated to death by a Soviet nuclear bomb, though we’d discovered we faced other man-made dangers equally as serious. I’d endured more than 10 years of severe, agonizing rheumatoid arthritis – but then enjoyed nearly that long again free of RA pain after the disease went into “remission.” I’d done a lot of the things I’d always wanted to do and a probably a lot more that I hadn’t, too. And I was good with all of it.  

My outlook is less rosy these days. The rheuma is back. As it did the first time I had it, it’s slowly, slowly ramping up, even though this time my arsenal of medical weapons is much better. The enemy advances anyway. This time, I’m not in my 30s. I don’t have the same energy level as I did then, and when I remember how the relentless, grinding pain of the disease flattened me in spite of being younger and stronger, I quake a little inside. Don’t get me wrong – I’m grateful that it hasn’t reached that level of severity yet this time, and I haven’t lost all hope. But living awhile has also made me a lot more pragmatic. The reality is that the rheuma’s getting a shade more painful and debilitating each day in spite of the powerful medications I’m taking. The reality is that only a small percentage of those who take these drugs get great results. I know they have the potential of slowing the progression of the disease, but to me it means that instead of finding myself crippled next year or in five years, I can maybe put that off for some longer period of time. Or maybe not. Rheumatoid arthritis is notoriously fickle.

So, as the 53rd anniversary of my birth and the 23rd anniversary of my diagnosis of RA approach, I find myself pondering the future in a way I never have before. Will I be able to work outside my home for much longer? If I can’t, will I be able to find a way to make a living from home in spite of my disability? Will I have someone in my life able to help me get through the days if I end up in a wheelchair? What if my hands are ruined?  I already know what it’s like to be occasionally disabled by pain and stiffness. I cope. I smile and work hard not to let it destroy my love of life or to affect how I treat and interact with my loved ones and the world at large. I smile in spite of rheuma, but I’m sure not fond of it.

The far-off future was always a mystery to me, but to my mind, it was an exciting one. I’ve always loved adventures and I’ve never feared being lost. I’ve always found my way back home, relatively unscathed. The unknown beckoned to me, even during the hardest years. It still does, but this time I’m wandering down the road of my future with a certain apprehension instead of running ahead heedless. I know there are hard climbs and high cliffs out there in the mists. There are dragons to fight, so I must be ready and well-armed. I know I need to conserve my energy for those times when I’ll need it.

And then, just as the drama is closing down around me, I remember that there will also be good times on the road to my future. There will be warm fires and sunny days, times of love and comfort among friends, family and even strangers. I’ll make new friends and find new pastimes, and because I’ve grown a thicker hide and I’m tougher than I look, I’ll get by. More than just get by – I’ll live as well as I can, as gently as I can, and with all the love and courage I can muster. I’ll enjoy the colors of autumn, the renewal of winter solstice, the hope of spring and the comfort of many more summers to come.

You know, it really is still an adventure, isn’t it.

Cross-posted to Blue Wren  // Photo copyright Leslie Vandever, 2007.

Posted in RA

About courage

One of my best friends — one who understands rheuma and who always listens when I need to vent — frequently tells me that I’m brave. That she admires my courage.Leonardohands

It embarrasses me a bit. It’s true that dealing with varying levels of pain on a daily basis takes a stiff upper lip.  It takes a certain determination, a sort of bulling on through the pain. I’m not sure that’s courage, however. And I sure don’t feel very brave most of the time.

Instead, I simply do because, honestly, what’s the alternative? Sitting around moping, hiding under my covers or letting my aprehension toward pain hold me immobile just isn’t doable. I don’t feel particularly special just because I endure rheuma’s persistent pain. That’s not bravery — it’s pragmatism. I have a life to live, and I intend to keep living it the best I can.

That said, perhaps “courage” does fit in there somewhere. This is an excellent post about rheuma and courage, and how the two can intertwine. Do read it. It’s worth a few minutes of your time. And take a look at the website it’s part of as well. It’s called “Creaky Joints.”  Cute.

Invisible? Maybe. Real? Absolutely.

When you have rheuma, it can hard to explain to others why you can’t just “hurry up” or “do” like anyone else. If you’re like me, you prefer to keep quiet about the pain you’re in – you don’t want people to think you’re a wimp, or a whiner, or that you’re angling for attention and sympathy.  Or maybe you just don’t want to have to launch into the whole complicated, mind-numbing explanation about your disease.EDTrail1

Again.

The trouble is that people usually can’t see rheumatoid arthritis. Those who have it generally don’t “look” disabled, even though the disease may eventually confine us wheelchairs or leave us bedbound and helpless. We hope that the cocktail of drugs we take each day will prevent that unwanted denouement – even as we hope they don’t prevent the proper functioning of our stomach, liver and kidneys. We dream that a cure will be found in our lifetimes, and that maybe it will happen in time to help us, too.

We’re pessimistic optimists.

Rheuma is an invisible disease. But we who have it frequently have to cope with the very real and varied disabilities that it causes. The inflammation and pain of RA often moves from joint to joint in our bodies. It’s if the disease is consciously malicious, going out of its way to conjure up new challenges for us to overcome.

Here’s an example: A few days ago, one of the metatarsal joints in my foot was painfully flared. I limped around all day like I’d broken several toes but didn’t have enough sense to go to a doctor. Yesterday it was my shoulder joint. The flare waited until late in the day to manifest, so when it was time for bed, I had a hell of a time getting my stretchy, pullover blouse off. Then had trouble sleeping because I couldn’t get comfortable. Today (and just about every day, if I’m honest) my hands are achy and twinge-y. When I went to hang a small fry pan on the pot rack after washing up my breakfastOverlookStorm mess this morning, just reaching up and fumbling the handle loop over the hook made me yelp, groan and, once I’d accomplished the task, cuss ferociously under my breath.

Rheumatoid arthritis pain is real. It can be, at times, absolutely excruciating. At other times it’s bearable, but it’s always exhausting. You have to move carefully. Slowly. You can’t just “do.” A flared joint is stiff. It “screams” when it’s forced to move. It won’t willingly bear weight. And there’s not much you can do about it but wait it out and take painkillers in the meantime.

Of course, painkillers constitute their own, exclusive little corner of hell.

But back to the “invisible” disease. When our daughters were young, my husband loved to take them hiking and fishing with him. Sometimes I went with them. If it was a “good” rheuma day, hey, no problem. I could tramp around and cast a lure with the best of them. But if it wasn’t, it meant bringing up the distant rear during the hike. I simply couldn’t walk fast enough to keep up. Each step – literally – hurt like a you-know-what. That I was walking at all – and even taking on a three- or four-mile hike in spite of my feet hurting like they’d been beaten with bamboo sticks all night – was a source of an odd and private pride for me.

After a while I’d fall so far behind that I was hiking alone, hoping to God that I didn’t trip and fall or twist an ankle, and that my family would notice my absence and maybe come find me if I did. Because I didn’t complain, they weren’t concerned about me. Once at our destination, the day would stretch out interminably. There was usually no place to sit down. I’d endure hours and hours of standing or gimping along the shore on my painful feet, casting for fish that, naturally, were totally uninterested in being caught and cooked for supper.

Still, I didn’t talk about how much I was hurting. I’d chosen to come along, so I did my best to smile and laugh. I really enjoyed being out in the wilds with my family. I enjoyed basking in the fresh air and bright sunshine, resting my office eyes on the pretty, natural surroundings. I’d spot flocks of Sandhill cranes passing high overhead, their weird calls finally reaching my ears like whispering ghosts. I’d watch great blue herons stalk tiny fish in the shallows (far more successful fishers than I could ever hope to be). I’d stare down the occasional herd of slow-moving cattle that wandered by.

And then there’d be the long, long hike home. I’d bring up the rear again.

Invisible illness. I remember one night in Germany when my hands were so painful that I couldn’t work the door lever to my bedroom. I could push it down with my elbow, but I couldn’t bear to pull it open once it was unlatched. The agony that little bit of pressure caused was simply more than I could bear. So I stood at the door and cried like a baby. Finally, I worked up the courage to take hold of it and pull. There was no choice. I had to go to the bathroom.

And taking care of that was another almost impossible obstacle.

I was fortunate enough to have the disease go into “remission” for a long time. While it was, I began to forget how painful my life had been before. I got used to being able to do what I wanted to do again. I backpacked. I canoed. I fished. I gardened. As a journalist, I covered local wildfires and kayak rodeos, bow-hunters and bears that had wandered into the suburbs. All of these required a lot of walking and sometimes, running. I did it. I even participated in whitewater rescue training with the local fire department, wetsuit and all.

Now the rheuma is back and steadily ramping up. This time, I’m speaking out when I hurt. I’m asking for help when I need it instead of suffering in silence. I’m researching the disease, learning all I can about it and talking with my rheumatologist, asking lots of questions, making him prove his stuff. Most of all, I’m learning to be my own advocate. I’m not whining. I’m not lazy. I’m sure not a wimp. Rheuma may be “invisible” to others, but it’s still disabling.

That’s a lonely, isolating condition to be in. Speaking up – and speaking out – is vital.

Posted in RA

Soup

My hands hurt. My fingers, when I try to use them to pick things up, feel like they’re coming apart. I grit my teeth and cuss, soft, beneath my breath.

But I’ve promised my daughter and her fiance a steaming hot pot of my homemade Hungarian goulash tonight. It’s been fallish around here lately — cool, crisp, bright days and increasingly chilly nights. Soup that’s thick with vegetables, potatoes, bits of meat and spices, mopped up with chunks of warm, crusty bread, will warm our bones and make us smile. Since I’m the only one around here who knows how to make it, here I go, off to the kitchen, achy hands and all.

Yes. There is joy in this.

30 Things about my invisible illness you may not know

National Invisible Chronic Illness Awareness Week  was Sept. 14-18. I missed it. One of the things bloggers who suffer from chronic illnesses did was post their responses to the statements below in an attempt to help the “well” world understand that these illnesses are common and that the people who suffer with them are human beings, not dry statistics.

Rheumatoid arthritis is very poorly understood by the general public. It’s considered a disease of the aged. Because of advertisements for over-the-counter remedies and painkillers, people think that it’s an easily treated disease. It’s not. And it affects children and young adults as often as it does older people.

So I’ve decided that even though I missed National Invisible Chronic Illness Week when it happened, I’m going to participate now anyway. And hopefully, someone out there will have a better understanding of what RA is because of it.

1. The illness I live with is:  Rheumatoid Arthritis.SwellyHand2

2. I was diagnosed with it in the year: 1987.

3. But I had symptoms since: 1987. I was one of the lucky ones. My doctor diagnosed RA quickly. I didn’t have to suffer with it for years like a lot of people do before getting a diagnosis and treatment.

4. The biggest adjustment I’ve had to make is: accepting the frustrating disability RA causes periodically.

5. Most people assume: That RA is a disease mainly of the elderly and that it’s easily treated. It isn’t and it’s not.

6. The hardest part about mornings are: putting my feet on the floor and standing up. My feet ache like I’ve been standing on them all night, even though I haven’t. My joints, all over my body, are also stiff in the morning. It takes a while to warm everything up and get moving.

7. My favorite medical TV show is: ER. I loved the character development and the excellent writing.

8. A gadget I couldn’t live without is: my hands-free can opener. RA affects my hands nearly every day to some degree, and sometimes they hurt badly enough that I can’t grasp things like manual can openers or even a cup of coffee. I also love my indoor grill because it helps me cook easily and healthily.

9. The hardest part about nights are: When I’m suffering a flare in a joint, the pain keeps me awake. I can’t get comfortable. So I don’t feel rested when morning finally arrives.

10. Each day I take four sulfasalazine tablets, one half of an Arava tablet, folic acid, magnesium, and Tylenol. Sometimes I take several doses of tramadol, a synthetic opiate painkiller, too. And I take fish oil and other vitamins in the hopes that they’ll keep me healthier and help my joints.

11. Regarding alternative treatments I: have tried many. They don’t work for me. I think mainly the people who sell these things are making money off the suffering of others, which makes me angry.

12. If I had to choose between an invisible illness or visible I would choose: Neither one, frankly. Both types of illness are difficult to deal with in their own ways.

13. Regarding working and career: Working is often very hard, even though I love the work I do. It’s tough to concentrate when I’m in pain. And sometimes, when I’m having a flare it keeps me from moving around easily and sometimes, from moving at all. That doesn’t help the career in any way.

14. People would be surprised to know: How truly difficult it can be to live with excruciating, disabling pain day after day and how much determination and courage it takes to keep on doing – and smiling – in spite of it.

15. The hardest thing to accept about my new reality has been: that there is no cure for rheumatoid arthritis and that even though the drugs to treat it have improved, they mostly don’t deal with the pain. I will always have RA. I will always have to deal with it. And it will continue to disable me as time passes in spite of everything I try.

16. Something I never thought I could do with my illness that I did was: Going skiing in the Alps and hiking in the Desolation Wilderness. It hurt and I was slow, but I did it anyway, and I was proud of myself.

17. The commercials about my illness: give the general public the impression that RA is easily treatable and controlled by drugs. It’s true that some drugs may help some people, but it varies from person to person and often, the effects of the drug don’t last. In addition, they all come with potentially serious side effects, some of which are worse than the disease the drug is supposed to treat. This is very frustrating as it makes people think that those of us who have RA are just not trying hard enough or that we’re whiners.

18. Something I really miss doing since I was diagnosed is: getting through whole days without any kind of persistent, chronic pain.

19. It was really hard to have to give up: I’ve been fortunate in that I haven’t had to give up much because of RA. I can’t do as much as I used to, and often mundane tasks like grocery shopping are much, much harder than they should be. I’ve had to learn to pace myself and accept that sometimes, I just can’t do what I want to do.

20. A new hobby I have taken up since my diagnosis is: I write all the time. I have two blogs and I write fiction. None of it’s been published yet, but writing is one of the things I can do that distracts me from pain. It’s a good and beneficial thing.

21. If I could have one day of feeling normal again I would: go cross-country skiing or snowshoeing.

22. My illness has taught me: to be aware of the courage people with disabling illnesses and injuries have, and to be grateful for and mindful of the good things in my life.

23. Want to know a secret? One thing people say that gets under my skin is:  when people say that I should walk more, or exercise more, and then I’d feel all better. The assumption is that my pain and disability is my own fault. I also get frustrated when people say, “But you’re too young to have arthritis” or “Oh, I know how you feel. I hurt my knee the other day …” They don’t have any real idea how I feel.

24. But I love it when people: try to understand and show compassion and kindness. And I love it when they don’t act like I’m just whining for the attention it brings me. Honestly, why would anyone pretend to hurt all the time?

25. My favorite motto, scripture, quote that gets me through tough times is:  This too will pass.

26. When someone is diagnosed I’d like to tell them: Try to keep a positive attitude and don’t suffer in silence. Speak up about your illness and educate your loved ones and the people around you. Don’t feel guilty when you can’t do everything you used to, or when you have to say no to invitations because you’re hurting. You are your own best advocate. And be sure to find others to talk to, even if it’s just online, who also have RA and can understand what you’re going through and offer moral support. It helps a lot.

27. Something that has surprised me about living with an illness is: how tough I am. I keep going with pain that I know would floor my loved ones and friends if they could feel it. I’m also surprised sometimes at how I can still smile and have a sense of humor in spite of feeling terrible.

28. The nicest thing someone did for me when I wasn’t feeling well was: when a co-worker stopped by one day when I’d stayed home from work because of a flare. He asked if there was anything I needed from the store or if I’d like him to bring me a meal. I was very touched by his kindness.

29. I’m involved with Invisible Illness Week because: even though I’m a few weeks late, I think this is a good way to raise awareness of RA and other invisible but debilitating and disabling diseases. Having RA can be very lonely, and because most people don’t understand what it is and what it means to the person who suffers from it, there’s a lot of guilt that goes along with not being able to do as much as you want to. It’s frustrating and sometimes humiliating. So anything that makes people more aware is good.

30. The fact that you read this list makes me feel: good that you’d take the time to learn more about me and about rheumatoid arthritis. I hope you’ll pass it along to other people you know so they’ll understand more, too. People with RA are people just like you. We love, we laugh, we hurt, we weep, and we keep going, just like everyone else.

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