The Great Debate

To exercise, or not to exercise?  That is the question, fellow RA’ers.

The problem is, when you don’t feel good, there is no way in heck you’re gonna do anything active.  And when people suggest to us that we would feel better if only we would exercise, we get offended.  “Do you see my joints?  Do you know how much they hurt?  I’m not hoping in a pool anytime soon, no matter how much you promise me it’ll help.”  That’s usually our take on exercise.

I’ve been pretty closed-minded about exercise.  I put limitations on myself that I didn’t even know were true or not.  “Swim for an hour?  I’d probably pass out of exhaustion after ten minutes, maybe.  Hike up a mountain?  You know how much that’d kill my knees?  I can’t do that.”

This is a picture I took at Yellowstone less than a year after I was diagnosed. We had to hike to see it. If I had decided the hike was too much for my RA, I never would have seen this magnificent view!

It is important for us to listen to our bodies when we hurt.  If we are performing an activity and something begins to hurt, it’s time to stop.  But we can’t assume things are going to be bothersome.  It’s when we put more limitations on ourselves than necessary that we start to let the RA control us.

Since the beginning of the new semester, I’ve been trying to become more active.  And it’s easier  to make myself follow through because I have an active roommate this year.  Every opportunity I had to go swimming, I went.  And it felt really great to move around freely without feeling any pain or stiffness.

Yesterday we tried to go swimming again, but with the rainy season upon us in Arkansas, it was way to cold to feel comfortable swimming at all.  Instead, I remembered a recent visit to my new (and improved) rheumatologist.  She explained the importance of exercising, and that her patients that exercise and much better in the long run than her patients that do not.  She said it was the difference in whether or not those patients could walk or not.  My rheumatologist told me not to run, EVER, but to swim and to ride a bike.

As a kid, riding my bike was my absolute FAVORITE activity.  I took pride in my bicycle.  Every so often I would even clean it (I thought I was so cool!). The thought of starting the sport again was exciting to me.

When the pool was too cold to swim in, my roommate and I ventured over to our university’s recreational center.  We found the stationary bikes and plopped down.  I started limiting myself immediately, without evening thinking about it.  “I’ll probably have to take breaks pretty frequently,” I said.  “I’ll probably only go two minutes at first.”

I started without any resistance and found it boring.  The machine was kind of complicated so it took me a while to figure out how to change the resistance, but once I did I set it to five instead of one.  It was just challenging enough for me.  I watched the clock slowly tick away on the machine, and I didn’t feel any pain coming.  Next thing I knew I had biked three miles!  My muscles were tight, but there was no pain whatsoever.

I was AMAZED.

Apparently I didn’t exercise long enough, because my muscles aren’t even sore today (although my Dad said it could creep up on me late tonight or tomorrow, so I’m skipping the bike today until I figure out if it will or not).  I haven’t felt any bike-related pain.  I remember my elbows hurting during dinner last night, along with a few other random joints, but nothing that could have been derived from the workout.

I’m not saying exercise is for everyone, and I can’t promise that you’ll feel as great after the workout as I do.  If you have any swelling I would definitely talk to a rheumatologist before trying any activity involving that joint.  But if you haven’t tried exercise, don’t write it off.  It’s worth the try.  That way if it doesn’t work, you can cross it off the list of things to try.  But if it DOES work…wouldn’t you want to know?

I’ve been swimming as often as I can since the beginning of school, so about three weeks.  It may take you that long or longer to see any benefits, but if exercising doesn’t irritate your joints, keep at it!

So I guess to answer the “Great Debate” – it will help some, it won’t help others.  But the main thing to remember in this argument is that you never know until you try.

Will You Waste Your Rheumatoid Arthritis?

“Be kinder than necessary, for everyone you meet is fighting some kind of battle.” – Anonymous.

Today I flitted through some old posts on the blog The Sullivan Four.  It a family’s “story of God’s faithfulness as [they] traveled the road of cancer and the loss of a child,” Hannah, who was a former classmate of mine.  Hannah’s grace and the grace of her family was and continues to be an inspiration to thousands.  I wanted to share something Jill Sullivan, Hannah’s mom, had found and posted to the blog.  While it is written about cancer, Jill had stated “I actually think there are a lot of words that could be substituted for the word ‘cancer’…These ten points could apply to many storms we face in life.”

I’m sure you understand what I want you to replace “cancer” with.  8 out of 10 of these points directly apply to our lives.

“John Piper writes about life after his diagnosis of prostate cancer. The list below and the full article (found at desiringGod.org) suggest purpose for any Christian in the midst of cancer. It is a time not for defeat and despair but rather it is a powerful experience to reflect on our purposes in life. This means that Christians are to seek to glorify God even when circumstances are most difficult.

1. You will waste your cancer if you do not believe it is designed for you by God.

2. You will waste your cancer if you believe it is a curse and not a gift.

3. You will waste your cancer if you seek comfort from your odds rather than from God.

4. You will waste your cancer if you refuse to think about death.

5. You will waste your cancer if you think that “beating” cancer means staying alive rather than cherishing Christ.

6. You will waste your cancer if you spend too much time reading about cancer and not enough time reading about God.

7. You will waste your cancer if you let it drive you into solitude instead of deepening your relationships with manifest affection.

8. You will waste your cancer if you grieve as those who have no hope.

9. You will waste your cancer if you treat sin as casually as before.

10. You will waste your cancer if you fail to use it as a means of witness to the truth and glory of Christ.”

I don’t like having RA, and I never will.  However, I strongly believe this disease has changed me for the better.  I’m not sure of who I would be if I had never been diagnosed with RA, but I’m certain I would not have as close of a relationship with God nor would I understand the importance of being kind to others (whether their storm is invisible, like mine, or not).

We can let this disease get us down, we can let it defeat us, we can wallow in the “what ifs” and “what life used to be’s”  or we can realize that we’ve been given an opportunity to better ourselves and others through our storm, as Hannah Sullivan did.

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An Experiment For More Effective Communication

It’s  no secret that a lot of us RA’ers have a hard to opening up to new people about our disease.  In general, most people don’t understand, and it’d difficult for them to understand the severity of RA.  Now, now, we mustn’t blame them, after all communication is a two way street. (I’m taking Interpersonal Communications this summer, and I’m really enjoying the class.  Can you tell?)  Let us analyze the situation for a moment.  Where does it go wrong?

Remember back before you were diagnosed, you probably didn’t know much about RA either.  Back then, if you heard the words rheumatoid arthritis, you probably associated it in you mind with those extra strength Aleve commercials or something (I know I did).  Rheumatoid arthritis is just like any other form of arthritis.  Then BANG!, you got it, and you didn’t know what hit you.

So I imagine most people think of something similar to those Aleve commercials when they hear me say I have RA.  We can’t expect them to automatically know what RA is.  When you tell them you have rheumatoid arthritis, the word “arthritis” will trigger several thoughts, probably something along the lines of an elderly woman outside in her garden wringing her hands,  popping a pill, and then giving a big smile before getting back to potting her petunias.  Of course, this is wrong, but this is what’s associated with the word “arthritis.”

Now that we’ve looked at the situation, let’s fix it.  What if we explained our disease backwards?  In other words, instead of telling them what we have and what it does, start with what it does.

Imagine it from their perspective: “I have a chronic immune disease that can cause me a lot of debilitating pain and fatigue.  It can be completely unpredictable, but that keeps life interesting, huh?  I take some pretty heavy duty meds for it too that also has some nasty side effects.  It all hinders what I can do on a daily basis, but that’s life with rheumatoid arthritis.”

What do you think?  I haven’t had the opportunity to test my theory out yet, but maybe this simple tweak in communication might help us change the way people view our disease.  Gimme some feedback on this one, especially if you test it out yourselves!  😀

Stay healthy!

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A True Arthritis Survivor

Author Melinda Winner has overcome several debilitating diseases to achieve her dreams of being a successful writer and cook, having published two cook books and won many prestigious competitions as well as appearing on the Food Network.

The Pittsburgh native attended culinary school as well as film and television production school in North Carolina in her early thirties. Winner worked as an art department coordinator and then as an art director for several years until returning to her true love: food service. However, Winner feared her ambitions had come to a permanent halt after being diagnosed.

Winner was diagnosed with Rheumatoid Arthritis at 25, although she believes she may have had it as a young teen as well. Over the next several years she was diagnosed with reflex sympathetic dystrophy syndrome in her left hand, arm and both feet, followed by fibromyalgia, osteoarthritis and degenerative disk disease.

An arthritis advocate, Winner met with members of congress to discuss reinstating the consultation codes so patients can see a specialist. She also asked congress to support the arthritis prevention, control and cure act of 2009 and the preventive health care Medicare fracture prevention and osteoporosis testing.

Q:  Could you describe your experiences when you were first diagnosed with RA?

A:  When I was first diagnosed I thought it was no big deal. I thought it was just an ache and a pain that I could handle. I was wrong. Because I did not take the meds, I have a lot of deformity. My disease progressed quickly. Then I felt sorry for myself and gained over 100 pounds. Then I got mad, I began to research, and knowledge is power. I lost the weight by cutting fats, snacks and breads. I began walking short and slow at first and then faster and longer as time went on. That was 16 years ago and I kept the weight off. I was on almost every drug out there for RA and my other forms of arthritis and nothing worked, until Enbrel. I have been on Enbrel for about four to five years, it worked wonderfully and I have my quality of life back. I would like to stress the importance of early diagnosis and treatment. If I had listened to my physicians I would not have as much damage as I do.

Q:  Your MySpace page says you have “five forms of arthritis and a birth injury.” Could you explain this further?

A:  The birth injury is to my right arm. When born I weighed in at well over 12 pounds. My Mother was a diabetic; they are notorious for large babies. My shoulder was crushed as I passed through the birth canal causing severe nerve damage. I have no feeling in my right arm or hand. My right arm is shorter and I cannot lift it any higher than my waist and cannot extend it out forward or backward.

Q:  After being diagnosed, would you have ever thought that you would become a published author, despite having RA?

A:  No, I actually thought at first this was it for me, so much pain and deformity and I already had the birth injury. I simply thought this was the end of the line for me. Who would hire me? I was worthless. Again wrong, that’s what I get for thinking. Actually, having RA had made me a better person. I am more compassionate and caring. I value life. Dedicating my life to helping others like myself transition and learn how to regain their independence in the kitchen and just enjoy life has been a blessing. I have met the most wonderful people with loving and giving hearts despite their illness and pain, true arthritis survivors.   I am honored just to have met them.

"A Complete Guide to Cooking With Arthritis" is available for purchase on Amazon for $17.93. The Kindle edition is $9.99.

Q:  What inspired you to write both of your cookbooks?

A:  The first was a group of construction workers in Mississippi helping after the Katrina disaster. I made them gourmet lunches and delivered them daily. They would tell me all of the time: you should write a book, so I did: “Yankee Cooking with Southern Charm” (I was born in the North but live in the South). I loved both styles of cuisine. After writing the first one I knew I wanted to write another but was not sure what kind.

The more people I met that had arthritis, chronic pain and/or injury that were settling for pre-cut and pre-packaged foods and were experiencing great deals of pain and swelling as I was made me realize that just because we were sick we didn’t have to settle for instant foods that were making our health worse. So I began to experiment with different foods. So many other folks asked me how I could make breads and cakes from scratch while in pain. Then it hit me. I had been preparing foods my entire life incorporating almost every part of my body. Hence my second book: “A Complete Illustrated Guide to Cooking with Arthritis.” It not only has recipes from everyday to gourmet but also color photos with step by step directions how to prepare the recipes using items found in the home and other parts of the body, not just the hands.

Q:  How is your second cookbook different from your first?

A:  The first is simply great recipes and the second is a first of its kind, a self help cookbook for those who have arthritis, chronic pain or injury. It also contains a culinary resource guide, terms section, my personal story and tips for living with arthritis. This book also comes with a free audio download version. The recipes are different, such as red cabbage cake, Moroccan potato salad, Bayou view sludge cake, etc.

"Key Lime Bunts" Yummy!

Q:  What kinds of recipes will readers find in your cookbooks?

A:  Everything from every day to gourmet. Breads, cakes, pies, barbeque sauces, red cabbage cake, Moroccan potato salad, Bayou view sludge cake, stuffed chicken egg plant parm, potato salads with chicken, bacon and cheese, stuffed portabella mushroom caps. Many sea food recipes.

Q:  What is an example of some of the tips readers with arthritis or another disability will find in “An Illustrated Guide to Cooking with Arthritis”?

A:  How to slice apples, squash, pears and potatoes using the forearms. How to transfer water, move laundry and trash cans using a plant stand. How to arrange the kitchen to ease on pain. How to prepare spices and herbs for later use using an ice cube tray. How to make a loaf of bread from scratch without kneading by hand, roll out pie and tart crusts without using the hands.

Q:  What was your favorite part in creating your cookbooks?

A:  Getting to share all of the new creations with my friends, family and neighbors, and of course, the tasting for myself.

Q:  What was your biggest challenge (RA-wise) in creating your cookbooks?

A:  Typing! My hands were purple and some days I just could not type because they were so swollen. Finding a publisher was not really easy either. I must have sent off 30 book proposals before hearing back from one with a yes. The stress of waiting to hear took a toll on my RA.

Q:  Is another cookbook in the works?

A:  Not really a cookbook. My next book is a collection of inspiring stories from many arthritis survivors. How they have triumphed over pain and of course their favorite recipe will be added at the end of their story. I am a true foodie.

Q:  When you’re not cooking, what do you like to do in your free time?

A:   Travel, spending days at the beach with my family, horseback riding when the pain allows and boating and chatting with friends.

Q:  What is your philosophy on living a life with Rheumatoid Arthritis?

A:  You live until you die and what you do in between is your choice. Meaning God gave us one life, so live it. I believe whole heartily, no matter what your age or condition, it is never too late to become what you might have been.

Winner hosts the Arthritis Survivor’s Network on Facebook, a page dedicated to creating a community for arthritis patients, spreading arthritis awareness, and, of course, sharing recipes.  Both of Winner’s cookbooks are available on Amazon.

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Battle Scars

All of us RA’ers know that arthritis can sometimes leave a mark, whether it be inflamed joints, disfigurements, or nodules.  This sort of “mark” can be recognized by the Non-Ra community as arthritis (even though some, if not most, will not understand it in its entirety).

But there are other sorts of battle scars, if you will, that RA patients may bare.  One of mine, for example, are bruises on my legs (see picture on right).  This is an after product of Enbrel, my biologic of choice, taken by injection twice a week.   In this picture, you can see the bruises of not only this week’s Enbrel injections, but last week’s as well.  These bruises have always been embarrassing to me.  For a long time now, I’ve disliked going swimming without a pair of shorts or a long T-shirt on to cover my battle scars, I usually don’t wear shorts (and even when I do they are almost to my knees), and I don’t wear dresses as often as I would like (I absolutely adore summer dresses).

Today was the first day that I wore shorts that showed my bruises in public.  I’ve been on Enbrel for almost four years, so this was a pretty big deal.  Even though I only went to two classes and the office of my apartment building, I was pretty nervous about it.  I pictured one of my classmates asking me about them, and wondering what I’d say back.  “Oh, I have Rheumatoid Arthritis.”  If I were them, I’d think I was full of you know what.  How does arthritis justify bruises?

But I don’t think anyone even noticed.  And even if they did…why do I care so much?  It’s time for me to put this silly fear behind me.  Sometime this week, I’m going to wear a summer dress in public.  😀

Yes, I have Rheumatoid Arthritis, but RA should never define us.  RA can put a limit on what we do, especially if we’re in the middle of a flare or if you avoid certain activities like I do to try to prevent a flare.  Therefore its silly to limit ourselves more than what is necessary, and I’m going to work very hard to make sure I never avoid something I want to do and that I’m fully capable of doing just because of embarrassment.

Lesson learned!  Life’s too short for such things.

Stay healthy!

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My Rewards System

I had a minor break down yesterday.  When I woke up that morning, I couldn’t believe how swollen and painful my hands were.  Not only that, my toes , knees and left shoulder decided to join in the mix as well.  I immediately took my meds (including the newest pain killer my rheumatologist prescribed), got a hot bath, used compresses, the works.

To say the least, I wasn’t a happy camper, but then I had a little talk with my boyfriend, Donavon.  He reminded me to stay strong and fight this disease, and that wallowing in a mess on the couch was not going to make dealing with RA any easier (those are my words, not his; he was much nicer in his approach).   My negativity was only making matters worse.  I quickly saw how right he was, however I was still in a lot of pain.  It was hard to be positive at that moment, so instead I worked on rejecting the negativity. I was still on the brink of a pity-party, but I shut it all out.  Donavon fixed me lunch and we watched a movie together, and I focused all of my thoughts on that, forcing any feelings towards my still swollen digits out the window.  Eventually time ran its course, and the intense stiffness began to dull.

A couple hours passed and Donavon had to leave for class.  As I walked him to the door I saw how gorgeous it was outside and instantly longed to be out of my apartment, if only to just sit in the sun next to my complex’s pool.  I decided to attempt to get dressed so that I could enjoy the warm rays and cool breezes waiting for me on the other side of my apartment’s constricting walls.  It was a chore to dress, especially into jeans (which took about seven minutes alone to finally wiggle on), but I slowly inched my way to my goal.  I was determined, and I found myself thinking less about the pain and more about how great it would feel to relax in the fabulous weather.

Getting dressed, while being a simple task, also forced my joints to work just the right amount to make them feel the tiniest bit better.  My mood increased substantially while sitting under a tree at the lake (Donavon was kind enough to take me after his class, it was a much better alternative than sitting pool-side at my apartment complex).  And as my mood increased, the pain in my hands began to decrease more.

When I let myself get down about my RA, I find myself doing exactly what I did yesterday morning: wallowing in a puddle of self-pity and tears.  When I’m in that state, I don’t want to do anything.  Why should I?  Everything I do hurts anyway, so I should just lay here and cry some more, right?

WRONG.  When I pushed those negative feelings aside, I felt my strength come back.  I was in no way shape or form fit to run in a marathon, much less walk across campus to my classes.  But I could get dressed and put on a little make up.  I set little goals, and I was proud of myself after accomplishing them.  It’s like the video game “The Sims“: when you set a goal for your Sim, their mood meter goes up after it’s met.  I then set a goal to get down the steps of my apartment and into Donavon’s car, and then out of the car to a nice spot by the lake (where I then plopped myself down and stayed there…lol).

Best part of it all: After acheiving my goals, I rewarded  myself with some quality time with Donavon, some very chatty geese,  and good ‘ole Lake DeGray.  It honestly made my day.

After a little reflection, I’ve decided I want to try to do this every day, sort of implement a rewards system.  Every day, I’ll set little goals and reward myself when they are met.  It’s a good way to keep from thinking about what you can’t do because of the RA, and more about what fun thing you’ll do after taking care of a few things first.

I’m still working on a little research before posting part two of The “D” Word (Disabled), but I promise it’s coming soon.  Until then, trying using a rewards system of your own.  I’d love to know how you reward yourselves!

Stay healthy!  🙂

RAers and Olympians

I’ve had a slightly rougher week than usual.  Whenever I have a hard time, I look for motivation.  It was then that I noticed something, and, well, it’ll  just be easier to let you hear the whole story:

Since the return of the winter olympics, I’ve been thinking a lot about the past.  As a kid, I knew of the olymipcs, but never cared enough to sit down and watch them until the 2002 Salt Lake City games.  It was probably a combination of seeing the Olympic train when it came through Malvern, AR, and reading about the rising Salt Lake athletes in our little “Weekly Readers” in grade school that got me interested in watching that year.  All I know for sure is that I fell in love with everything about the games: the opening ceremony, the olympic flame, the athletes, the games.  I knew then that I wanted to do something awesome, like Apolo Ohno, Sarah Hughes, Kelly Clark or Michelle Kwan.  Not necessarily sports, just something.

The next year I severely broke my arm, keeping me out of any athletics.  I took this to be a sign that God wanted me to concentrate on music, but when I started to get really great at the drums, I was diagnosed with RA.  I was fifteen.

Just a few months after being diagnosed, the winter Olympics were back.  I felt like I was 11 years old again, eager to watch Apolo, Shaun White (aka the Flying Tomato) and Shani Davis.  I was captivated by the games, I’d sneek onto the internet in school just to check the medal rankings and to make sure my favorite athletes and teams were getting through to the finals later that night.  The return of the olympics brought back all the feelings I had four years ago: I wanted to so something great, like all these awesome Olympians.  But this time, with the RA, I REALLY didn’t know how I would be able to.

It’s taken me years, but I think I’ve finally figured it out.  The dedication, the drive, the sacrifices, everything my favorite athletes do and have done to achieve gold, everything I wanted to do…isn’t that much different than what RAers do.  Or anyone with a life-altering disease.

The sacrifices we RAers make are always in the for-front of our minds.  Be we do it to stay healthy, we do it knowing, hoping, that our efforts can mean a better year/month/day.  It’s part of how we prepare to take on our adversary: Rheumatoid Arthritis.  It’s the same as what Apolo does to prepare for his games.  For Vancouver, Ohno dropped twenty pounds.   He worked out steadily, and stated that no other speed skater would be able to match how fit he is.  Think he did that just for the heck of it?  No.  I’m pretty sure Mr. Ohno missed his fast food, leisure time, etc.  But none of that is important when you have such a huge goal in front of you.  The little things you give up fade to the background, because they just aren’t as important anymore.

Figure skating pair Shen Xue and Zhao Hongbo of China put married life on hold to go for gold one last time.  They lived in dormitories, in separate rooms, and ate cafeteria food.  These olympians don’t get a cushy life, they have to eat certain foods, take care of themselves, and submit to a life of routine and very hard work.

Apolo, Shen and Zhao have all won gold medals.

We have some very, very hard times while living with RA.  There are some days that we can’t even get out of bed.  There are some days when the medications we take leave us vulnerable to sickness.  But we have to keep going with our lives, we have to make sure that our disease does not progress farther.  We have to keep battling our adversary.  Speed skater J.R. Celski thought he was out of the Olympic running after a fall on the ice caused him to severely cut his leg, narrowly missing a major artery that could have claimed his life.  This was two and a half months ago.  Celski is currently in Vancouver, already a bronze medal winner, and on track for more medals before the week is over.

It’s important for us RAers to know when to quit.  Knowing your limits will save you from injury, and can save you from agrrevating your RA, which can lead to flares.  Figure skater Nobunari Oda of Japan completely halted his performance in Vancouver when one of his skate’s laces snapped and began to unravel.  The stop cost Oda points, but it was a safety hazzard.  Had Oda continued he would have run the risk of severely injuring his foot and would therefore risk the rest of his skating career.

Michelle Kwan, arguably one of the best female figure skaters of all time, knew when to hang her skates up, too.  After failing to grab the gold in 2002, Kwan was eager to try again in the 2006 Turino games.  However, Kwan sustained an injury, and was unable to compete in the games.  Even though it was hard for her, Kwan knew it was better for her health to withdraw.

We aren’t so different from our Olympic heroes.  We both work very hard to achieve our goals, whether it’s a gold medal or living a normal life.  We make sacrifices (and big ones, at that).  We alter our lifestyles.  We don’t give up, but we are smart enough to know our limits.  Olympians give it everything they’ve got to get the gold, and Rheumatoid Arthritis patients give it everything they’ve got to battle the disease and to live a normal life.

I feel like I am doing something as amazing as Apolo, Mr. Flying Tomato, and all of my other Olympic idols: I don’t let this disease push me around.

Bottom line: it’s all too easy for us RAers to be sad. I know sacrificing things you love to do is hard.  I’ve been there.  I know that finding the time to properly take care of yourself (eating better, getting long baths to ease your joints, etc.) isn’t easy.  But we should be proud of the hard work and dedication we put into living a good, healthy life.  I’m proud to say I do and have done everything I possibly can to have a normal life, and you should be proud of ourselves, too.

I encourage you all to watch the rest of the Olympic games this week, they truly are inspirational to me.  And as always, stay healthy!

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